Fentanyl & Opiod Induced Hyperalgesia

Monday was a very difficult day for me and by far the worse I’ve experienced in 12 years of being on medication!

I’m on the final hurdle of coming off an opiod called Fentanyl. You’ve probably seen coverage in the news about the illicit use of this drug on the streets and the subsequent deaths. Fentanyl overdoses are rife and it’s street use is deemed an epidemic in the US but batches have sadly entered the UK also. To put it’s strength into perspective, I found these infographics.

Fentanyl was not always on the streets and it being available on the black market, is a relatively recent problem. Fentanyl is primarily used in cases of extreme pain, inc palliative care. Here is some info on the street use of Fentanyl.

(Could only find US/CAN infographics)

Fentanyl is 50-100 x stronger than heroine, morphine & oxycodone. It is a synthetic drug and doses are given in MICROgrams not milligrams. Patches with 72hr release are the go-to for those with chronic pain but it can be admistered by IV and in lollipops, that are often used for added relief and breakthrough pain. 

I’ve been using this drug in patch form, for just over a year now. My body is dependent on it but I am not an addict. I feel it is important to know the difference because needing the drug to function day-to-day, is very different to buying off the street for a fix. I have no high from the drug and no desire for it but when the patches run down, withdrawal and pain kicks in. It is not a pleasant experience AT ALL.

I did experience a very dangerous situation last year, where my body couldn’t tolerate the dose increase and I nearly fell asleep whilst overdosing. The quick thinking and knowledge of a friend that uses the same drug, ultimately saved my life. Read about it here:

https://stomainateacup.wordpress.com/2016/06/11/45/

In summer of this year, I became bedbound for 2 wks with extreme all-over body pain and later diagnosed by my Rheumatologist with Fibromyalgia. A brief description of fibromyalgia: 

  • Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have: increased sensitivity to pain, fatigue (extreme tiredness) muscle stiffness…’

It is said to be a condition of the central nervous system, where an abnormal level of chemicals in the brain, affect the way pain is processed. It does not show in any tests and is diagnosed by the process of elimination. It is said to be caused by trauma for e.g surgery or traumatic personal experiences. 

I refused to simply accept this and believed I could make changes to ease the symptoms. I know my pain was not this bad 2 yrs ago and couldn’t make sense of it. I believed my autoimmune issues had worsened with regards to arthritis but not a condition I had no proof of. So my mental state and something I was taking MUST be the cause! Note: This isn’t the case for every person with Fibromyalgia but in my personal experience, I felt I had affected my body in some way. The pain differed from any physical pain I had experienced before. It had no pattern, no rhyme or reason and was mentally crippling me.

I decided to read up more about opiods and alarm bells rang when I came across the term ‘opiod induced hyperalgesia’. The basic definition is as follows:

  • ‘Opioid-induced hyperalgesia (OIH) is defined as a state of nociceptive sensitization caused by exposure to opioids. The condition is characterised by a paradoxical response whereby a patient receiving opioids for the treatment of pain could actually become more sensitive to certain painful stimuli.’

I can happily tell you that I have come down from 37.5micg of Fentanyl to 6.5micg. This converts to around 118mg of morphine daily to just 18mg. Fentanyl is one powerful drug and long term use is clearly not ideal. This is the same drug Prince depended on for his chronic hip issues and ultimately what ended his life. 

Basically my brain was telling me I was in more pain because of the opiod. So I decided it was time to get off this drug! I felt certain that my biological drug ‘Golimumab’ was helping my suggested Psoriatic Arthritis and an MRI confirmed my Trochanteric bursitis (fluid swelling in my hip) was going down. There was NO reason for so much pain in my minds eye.

The journey off Fentanyl has been incredibly hard. It started off fairly easy but the lower I have gone, the more I have experienced withdrawal symptoms. These range from random pain, insomnia, nausea, abdominal cramping, restless leg syndrome (5 hrs at a time), delusions, headaches, TMJ, sweating, loss of appetite and dehydration. I genuinely have empathy and the utmost respect for addicts and their battle to get clean. Just the step from 37.5micg after one years use, has been enough to wanna jump off a high building. It takes so much strength to get through withdrawal.

My mind hasn’t been my own at times and I have been scared for my life more than once. Although I have hated being stuck inside these walls, I am safer here where eyes are watching. I am using the good days to remind me that these symptoms are temporary and they will stop. I will finish this reduction and I will not let it beat me.

I intend to use my osteo, swimming, acupuncture and massage to ease any aches and pains. I’ll continue on my biological drug and receive steroid injections into my hip when necessary. I will be practising self-care DAILY because my life depends on it. This has by far been the hardest year since my big flare of 2012 and surely I deserve better health after going through major surgery and change?!

I believe my depression this year has largely been due to the Fentanyl. My mind already feels clearer but I’m not quite there yet. All I ask is that friends, family and those I write for/with etc, be patient with me, be more tolerant than ever and know I am working on getting Shell back completely and need you to be there at the end. I may cancel arrangements, fail on commitments and seem moody at times but I assure you that it won’t be forever.

For anyone else out there on opiods, please reassess your situation and if any of what I have said rings alarm bells, discuss it with your care team. Some can attend reduction clinics and if you have been on opiods for many years, you WILL need ongoing support. This is not something you should do alone – please trust me on this. 

Of course I’m not saying this to all on opiods. For some they are the means to function, they are a lifeline and I do not deny that, however OIH can happen to any of us and I just wanted to raise awareness of this issue, that was never mentioned to me by my care team.

Yet again I had to figure it out for myself but I will say that being aware of the facts, is pivotal to managing chronic conditions. So educate yourself on EVERYTHING. Be the best advocate for your own health.

Shell 💋

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Chronic illness is a problem shared

My very, non-sick, grounded, level headed fiancé who doesn’t really do excitement or an over-balance of any emotion, was diagnosed with depression just over a year ago. The happy-go-lucky guy I knew, had become grumpy, tired, lazy and totally void of motivation. It took a year for him to see a GP and in that year, I had failed to see he was suffering and with something I had had for many years. It was right in front of my eyes, yet I couldn’t see the obvious.

He had subconsciously avoided acknowledging and therefore accepting, what he has seen many times with myself and his mother. My partner has always been THE coper, THE positive one and THE rock. I realised that he was internalising it all because he believed depression to require a reason and he wanted to avoid hurting me. However hiding it only hurt us both more and I felt that I had failed him.

As the time passed and we talked, I realised that it’s BECAUSE I am sick, that he couldn’t sound off on me. He felt it would seem trivial in comparison and that he had no reason to be depressed. Again I felt that I had failed him. Had I appeared selfish or not taught him enough about chronic illness? Surely he understood that there is no competition or comparison when it comes to chronic illness?

Apparently not and as his partner, a parent AND an advocate, I realised it was my duty to speak more openly about chronic illness and especially about the toll it takes on the mind! Instead of being the person raising broad awareness and challenging stigmas, I had in fact caused a stigma in my own home! My experiences are not only there to influence friends or patients but those closest to me. 

My partner felt that he couldn’t ‘burden’ me or ask me to deal with his issues, on top of my own, especially when some of those issues were rooted in his experiences of living with MY chronic illnesses. I have expressed that he must never see comparisons, that is not what I see at all. I told him that he absolutely must talk to me BUT I understand and agree that at times, that I cannot manage both my own health and his. 

It is so important that things like GP appointments, chasing prescriptions and practising self-care MUST be something he does for himself. Not only because it’s a lot for me to manage but because he has to care enough about himself, to do these things. If you don’t love or look after yourself, you cannot do so for another.
I have shown him that self-care and self-love is SO important and I have no issue with him discussing our situation with others. I would expect him to have friends or a friend he can turn to, but being the quiet; introverted type, it’s unlikely he would outwardly seek someone to talk to. So one commitment I do need to make, is encouraging him to talk to others, be it a friend, colleague or professional. He knows there is no shame in it, he’s very in tune with his emotions but has never been one to discuss them spontaneously. I want him to rant and say how hard it is, how demanding I can be, how much pressure there is on him to provide & support our family…and know that I see it ALL and acknowledge ALL he does for us/me and that it is eternally appreciated. He is the glue that holds this family together, even if it doesn’t feel that way to him.

I was relieved when he joined the roller derby team I was skating with, back in 2015 and that became a great outlet for him. He was also becoming increasingly unhappy in his previous job and supporting him to leave and pursue a new role, was crucial to our family survival and growth. I don’t deny it was an incredibly tough time. 

As his partner, I could see his skills were being stretched to the companies advantage. He is incredibly skilled and proactive in his work but lacks confidence, which means he will go above and beyond without reward, progression or confrontation. Being hard-working and humble, makes him such a respected colleague but I explained to him that to get past this depression, he needed to get tough and make changes for his own happiness. 

With him having the opportunity to leave early last year; due to a company reshuffle, I was hopeful things would improve. However I forgot that he must feel ready…and he was not. A few more months passed and he had looked at every option (he’s a serial risk assessor…or procrastinator as I say!) and finally decided to move on. Within days he was head-hunted by a reputable company he had previous dealings with and this was the confidence boost needed. No amount of praise from family was going to convince him and it was professional recognition he had yearned.

It took all my strength to support him through this process, but I know that a relationship is a two-way street and in the end, supporting his mental health has in turn helped mine. He now understands that depression has no rhyme or reason and when either of us has ‘one of those days’, we both know how to support one another and deal with it. Some days he wants smothering, some days he needs to be alone or to just skate. I am very aware now though, that he needs to be professionally challenged and appreciated, as well as personally. I had forgotten what being employed and professionally pressured felt like!

In hindsight I should have seen it coming because if I find living with my sickness hard, surely those around me do too. I now feel I know the most intimate form of empathy there is. However I will always find it hard asking for help and not feeling like a burden to my family. Relationships like chronic illness, are not linear processes nor are decisions/choices finite. They are ever-evolving and it’s vital to keep the channels of communication open.

My partner also has a better understanding of the mental investment we make in drug treatments. The hope we have that meds will ‘make things better’ and he understands that it’s normal to feel helpless and hopeless sometimes…and hate the side effects! In summary, I can say I have learned that chronic illness is a shared process, that affects the entire immediate family. Not only must I practice self-care but I must encourage my family to do so too!  

To James:

Many of my community buddies and followers hear about you briefly or have met you at events, but don’t truly know how amazing you really are. My good buddy Steve Cartmail greeted you in 2016, as the great man behind the legend, however you are the legend behind a woman trying to be great! I wouldn’t have started my blog or stuck out advocacy if you hadn’t pushed me and supported me. You continually ground me and tell me when I’m an ass. You also embraced my community by joining me at events, which I know you find hard being a social recluse 😉

I wanted to add that I really should say THANK YOU more. Since meeting in 2010 and becoming a model flatmate, then a tower of strength supporting me through the break-up my civil partnership to taking a risk on starting out together, you have been nothing short of incredible! You helped me move on from the past and live spontaneously whilst lodging on your Mums living room floor. I will forever cherish those 6 months of dating like teenagers! 

Then you were there to bring me ginger biscuits and rub my back through 2 difficult pregnancies, sat in the bathroom through daily diarrhoea, have attended endless hospital appointments over 7 years (all attended due to your sacrificed holiday leave), you waited in the car for 8 hours whilst I had major surgery to only see me for 5 mins and drive 2 hours home, you have suffered my depression and your own, as well as my multiple health conditions. 

You shop, tidy, cook and work your ass off. You are incredible at your job and I am extremely proud of how far you have come. You are the greatest Dad to our children and continue to be patient, loving and affectionate in our relationship. All the manners and morals instilled by your Grandad, Nan and Mum are admirable! You showed me how parents SHOULD be and due to my past I never felt I deserved a good guy or a happy-ever-after, but I got both! I may be sick but you make me laugh, feel safe, loved and I am happy. This is worth more than any temporary high, material good or cure! 

I love you always, Shell x 

Be a Shepherd in a world full of Sheep.

The following article from Forbes, perfectly sums up why I am a particularly open & frank individual. I haven’t always had the opportunity to be heard, so now I have this platform & others to speak from, I will remain tenacious without fear. Recent criticism or treatment by others, has given me a need to vent; so here it is.

Please read this link before continuing: 

https://www-forbes-com.cdn.ampproject.org/c/s/www.forbes.com/sites/kathycaprino/2017/10/31/the-top-5-reasons-people-tolerate-unacceptable-behavior/amp/

When you spend parts of your life feeling suppressed by narcissistic & ignorant behaviour, you can unknowingly be moulded to believe & behave the same. You also accept what people throw at you & ultimately become a sheep. I’ve changed vastly over the past 10 years & whatever narcissism I may have had, I addressed through therapy & self reflection. I have no doubt my journey as a chronically sick person, has changed many of my views & I have evolved into a confident & compassionate individual who wants to lead; not follow!

Societies historical, hierarchal structure based on qualifications, age, colour, gender, sexuality, social status & money has resulted in an innate fear when it comes to challenging these ‘norms’. Right now power in the US resides with one of the most ignorant men on this planet, yet he still sits in the White House & we must ask ourselves why?! The suppressed sheep are following blind, whilst the liberal & passionate are wide-eyed & fear for their future.

We are often brought up to believe as our parents do. I grew up around the ideas that men were the authority, that being gay was a ‘phase’ so therefore just a form of sexual exploration. I believed that success is based on your education, job or financial status, that expressing your emotions makes you weak or an attention seeker & that if you are slightly ‘different’ you are less worthy of respect, opportunity and love!

I am more privileged than many but I too have tolerated bosses talking down to me, people treating me like I wasn’t good enough & believing that some professions are better than others. From these attitudes, I grew angry & frustrated. I had my own strong beliefs but was drowned out in a sea of people deemed more worthy of being heard. Having grown up around parents with many problems of their own, I had no mind space to develop my views in a way that others would understand. I didn’t even find my true identity & value until aged 26! My parents said that I just ‘talked too much’ & was over-opinionated. I was patronised & frustrated at not being heard or understood, so I never learned how to articulate or convey my feelings & at times my mouth ran away with me.

When you’re suppressed for so long, you either curl up into an anxious, timid ball, you become a sheep or you snap! It took many things to make me snap but snap I did!! For e.g. When my first boss ignorantly implied my disease made me less able to do my job reliably or when another boss paid me pittance compared to my male counterpart. When my ex-wife’s mother implied she was wasting her life being with me, when she could date a man with better job prospects. When a close family member implied my boyfriend was less desirable because he wasn’t a Doctor. When another family member expressed in shock that I was a good parent, as if it were beyond me. When I was accused of creating my blog for attention & letting my illness define me negatively. When the PIP (personal independent payment) puppet rolled his eyes at my application, manipulated me & proceeded to patronise me over & over. When a stoma nurse spoke rudely to me infront of patients I support, declaring I shouldn’t challenge the unethical rules about support wear just ‘because’, or when people in the IBD & Ostomy community have wrongly called me big headed or a know-it-all, because I confidently share my knowledge & challenge what I believe to be wrong. Or how about when so-called friends have extended a hand of support but not unconditionally, & go on expecting me to shout ‘how high’ when they say jump! 

I am no one’s scapegoat, slave, fool or pity case. I will stand up for myself when others behave unacceptably. I won’t bow down to age, gender or this false sense of hierarchy. I’m not going to stop being tenacious, passionate or opinionated because others can’t handle me. THEIR behaviour is unacceptable, not mine. I am worthy of being heard. What gives anyone the right to say I’m beneath another because of my qualifications, age, gender or sexuality? Why should my lack of specific qualifications mean my knowledge is therefore invalid? Why should being a woman or a full-time Mum make some view me as unsuccessful? Why should I be paid less than a man? Why should I work for free or represent businesses & not have my time compensated? Why should I be judged for my illnesses? Why should I be manipulated by so-called friends? 

So you see, I’m doing things my way. I am trying to do some good in the world, am raising my kids to be loved & happy, am openly proud about my body, sexuality & gender. I have valid things to say. I am a successful woman regardless of certificates or letters after my name. Just navigating this bitch called life, makes each & every one of us a success! So all the haters & suppressors can BITE ME!

I’ve worked hard at self improvement & I finally like who I am. It is not my problem if people continue to misunderstand me, or assume I am something I am not. Stand up for what you believe in and don’t accept how people treat you just because THEY are in a position of power, are paid more, are threatening or think you owe them something. Be real, be you & seek respect from those who you respect in return. The rest…well…baaaaaaaa 🐑

Shell
💋

Rose tinted perceptions – The deceptions of social media.

I’ve been feeling pretty insecure. My confidence was shaken earlier this year but I’ve been taking lots of time to reflect. I assessed the roots of my insecurity and the growing distrust I was having. I’ve concluded that I’ve been too distracted by outside influences and have been allowing these to add to my internal pressures. I’m certain I’m not alone as someone with a chronic illness on this and would be interested to hear others views.

Being unable to work & spending lots of time on social media; to break up the isolation, I all too often find myself comparing myself to ‘healthy’ parents or those with successful careers. I get sucked into the filtered perceptions of how others portray their lives. This then leads to a pressure to function more than possible and I push myself to succeed at my own detriment. I often feel like life is a race or survival of the fittest and I’m doomed to fail.  My illness has left me falling behind and feeling a failure. Others appearing to be winning the race, has caused my depression to resurface.

I see those that have careers or Mothers that literally do everything with their children and wrongly pressure myself to be the same. This is unrealistic in my situation and does nothing for my mental state or feelings towards those having a ‘seemingly’ rosey life. I partly blame how some use social media, for this issue.

I often feel like other Mums juggle being perfectly groomed, going to work, to the gym, socialising, taking their kids to every after school club and EVEN managing date nights & a sex life, and to me they appear like superwomen.

I have honestly envied them. I’ve even felt anger towards them. I know this is not healthy. The way we contribute on social media has a big impact on how we view each other and I’ve realised this is the root of my problem. I need to stop believing everything I read 😉.

I’ve been guilty of this crime on occasions. Posting my best days, my parenting successes but not to look perfect to outsiders, to make myself believe my 5 seconds of an altered reality. A snap shot of a perfect life. I want to feel like I’m a superwoman and great Mother but why? Why do we feel the need to show altered truths on social media? Here’s snapchat aiding my altered reality. 

Those who post snippets of their seemingly ‘perfect’ lives, seriously aren’t showing reality. Why is there no balance? Why don’t we try to dispel these ridiculous illusions by scrolling by, or deleting those that make us feel inadequate? Why don’t we call out those we know, when they hide behind this facade? Or even remove ourselves from the addictive social media realm completely? Why…because we are nosey creatures by nature and one word…FOMO. (To those who use actual words 😜 – Fear of missing out). I must add I understand when private, unhappy issues are not divulged. Some things are not for social media. I’m solely talking about fake lives.

When you are chronically ill, social media is often the only way to feel connected to others, whether this be by communicating with friends and family or in support groups. If we are stuck indoors suffering, resting or recovering, we are lured by social media to stay up-to-date with these networks. Sadly whilst doing this we are exposed and vulnerable to seeing many skewed realities that can make us feel inadequate.

Now don’t misunderstand me when I say this, I’m not saying people shouldn’t post achievements or happy aspects of their lives, we all like to share our ups but a realistic balance would be better…right? Let’s speak up and request that people be real. By doing so, anyone out there struggling, won’t feel like they are alone. Also by being honest on our personal pages, we maybe won’t always require the retreat to our private groups. Groups  where we feel instant acceptance and where we are surrounded by others that are real. Where we don’t hide our pain of isolation or sickness & the hardships we experience with chronic illness. 

Through blogging I try to show chronically sick individuals that they aren’t alone. I do this by being as transparent as I can be. I share my ups and downs, I share my very raw emotions in the hope someone can not only relate but comfort me on my journey too. Mutual understanding. This is something I feel is lacking with many on the personal pages of social media.

I’m definitely not saying I wish for negativity, we know there is far too much of that in the media right now and social media is a platform for many attention seeking types. This can also be mentally draining and bring us down. So balance is the key! Surely we can be realistic about family life and not compete for social status. It’s not the 1600s and nobody has the perfect life!  

I follow a couple of amazing bloggers that share their lives so candidly and I adore them for this. Krystal of Bag Lady Mama shares her life as an ostomate but also as a Mother of two, often struggling to balance the norms of working, breastfeeding and being a woman. Ostomate Sam Cleasby also writes so openly and sometimes with helpful humour. She talks about her life with 3 children, her hubby, work & beloved allotment. I love that Sam shows so much love for her family but is clear that it’s no bed of roses coping with it all on top of a job and depression. She shares wicked images of her family, hobbies, outfits and nights out but recently had to do a follow-up post after receiving some unkind messages; explaining that this doesn’t mean life is perfect or that she parties hard every night. Partying doesn’t come without suffering (and I don’t mean just hangovers!) but the repercussions on a sick body. 

Image from Constane Hall on Facebook

I don’t just follow chronically sick bloggers but have huge respect for women like Queen Constance Hall, who has a huge new combined family and is learning how to live together through life’s ups and downs. She shares beautiful professional pics but balances this with real images, that dispel the stigma of perfect body image. She challenges the media for contributing to female insecurities of feeling too fat or too thin. Plus highlighting that we don’t all put a face on at 8am for the school run! Her gorgeous breastfeeding pics and posts about her parenting fails/wins, make me love her more and more each day. She lifts people up by showing she’s not always up herself!

Now if everyone could be as honest & transparent on social media, maybe…just maybe we could believe they’re real & a human that puts up with sh*t, feels sh*t, fails at sh*t and sometimes looks like sh*t like everyone else. Maybe we wouldn’t pressurise ourselves to be perfect. Maybe we could enjoy social media as a form of communication.

I feel there’s a misconception that if we post only our happy moments or filter our life for others, that we offer a healthy view and show we are happy and successful. When in reality it makes others question our honesty and in turn prevents us from accepting our own reality. One day when life doesn’t seem so perfect, we may not know how to reach out for support. How can we keep up the image of a utopian bubble and expect help when things go t*ts up! 

These post can’t have the affect of desiring others to be happy for us. Being false doesn’t fare well when developing or maintaining relationships. Your disguised ‘bragging’ may be the blow that tips a struggling friend over the edge. It’s far better to relate in life and it’s comforting to be able to say ‘hey me too’! We of course cannot be responsible for our happiness causing anothers unhappiness. We can only control our words and actions BUT we can be real, honest and pave the way for trust and sharing each others happiness. With truth we can rejoice in each others ups and support each others down. United by our trust, not divided by our deceit.

I make this vow that you may see me doled up when possible but equally you will see me looking like crap. I post pics of my good vs bad days to show that my conditions take their toll. Whilst comments like ‘I can’t see any difference’ or ‘you still look good’ are offered with kindness, they can feel dismissive of our conditions and even imply we are not believed. I spend much of my week in bed, in pjs and in pain…why portray it as anything else? I’m not just gonna show the pictures of me out with my kids when they’re being cute, I’ll show you when they don’t eat their veg & I’m losing my sh*t over it. I won’t just post the posh food I make once a month but the beans on toast or nuggets I threw on a plate. 

Not only is it physically and financially impossible for me to cook beautiful, nutritious meals daily but I admit that I like beans on toast too!!! It’s also logistically impossible (I don’t drive) to take my kids out every weekend, visit every attraction in Summer or take my kids to out-of-school clubs. How does anyone have the time or energy to take their kids to numerous clubs a week?! 

I kick myself when seeing other Mums dedicating their time to after school clubs. I figure I never went to swimming club and still learned how to swim, so my kids will survive right? I’ll be happy if they get through school without hating the conformist curriculum and grow to have their own minds and characters.

I know my kids are clever but I’m not gonna push them to get endless certificates, just to make me feel secure as a parent. I know taking part in some things can help them grow and have a sense of achievement. I see my Mummy friends able to attend things and fear my illness preventing this, will be of detriment to my children  l’ll support anything they wish to do but they already spend 6+ hrs at school, are forced to do tests for the government’s statistics & are not allowed to develop their learning to suit their needs, so I figure that if I free them of pressures at home and follow their lead, it’ll all work out ok. 

I do love seeing Mums sharing proud moments but would like to see their parenting failures too. Not to laugh…to relate. I’m struggling so much and just some sense of normality on social media would truly help me and I believe others too. The sales of ‘The Unmumsy Mum’ surely proves we are craving this confirmation as parents. Why does it feel like some families are living a fairytale, whilst I’m as calm as the Mum from Malcolm in the middle? 😂
I’m going to continue praising my children (and myself) for all the small achievements & remind them that it’s trying their best and not just winning that counts. They don’t have to follow the crowd and neither do I. So to perfect parenting and perfect morning hair, I stick a finger up at thee.

I do not believe that any parent goes without their bad days, I just request they share these as well as the good ones. I’ve spent months belittling MYSELF for not being like some social media Mums. I don’t want to be sucked in social media anymore; purely because I’m feeling vulnerable but I’d still like to still enjoy the positives that come from social media. I don’t want to leave my support groups, access to useful info, networking and the real people. It feels unfair that we have to protect ourselves from some on social media. I may seem ridiculous suggesting all of this but why should this perfect life bullsh*t be more acceptable than protecting people’s mental health, due to uncontrollable circumstances. Is being mindful of others not a thing now or are we just helpless to the uncontrollable narcissism that exists!

So in summary, I’ve realised that all I can do is EXIST and be real. This doesn’t mean my kids will suffer because they aren’t overachievers. They are fed, watered, clean, dressed, stable, loved and taught to be kind. I’m just about fed & watered most days but I definitely have a heap of love and kindness to see me through the rest. I am doing the best I can, it’s all any of us can do. Stop photoshopping life, keep the balance and accept life is beautiful just when we wing it and more so when we win at it.

When the cared for, becomes the carer: Understanding true empathy.

Empathy, what is it? It’s meant to be something we as humans can feel and offer to those like ourselves. Empathy is the ability to understand, relate and feel caring towards those in need. 

As someone who has been chronically sick for 10 years, I truly thought I had a total grasp on empathy. Some may know me from my blog ‘Stoma in a teacup’, where I offer information, support and try to empathise and relate to those much like myself. During the past year I have started a local support group for those with IBD and ostomies. I love to help those who need support and seek the experience I have of the care system, the conditions and best routes of advice. I offer one to one support and advocate/offer a voice for those who struggle. I truly feel pain and sadness for anyone suffering as I do, so why have I lost the ability to be empathetic to a member of my own family? I’ll tell you my story.

On Dec 27th I received a call to say my Mother had become quite unwell. To give a brief background, my Mother has been a binge drinker for many years and never addressed the issue. We don’t have a close relationship, as many past incidents have led me to want a life independent of my Mother. She has made many mistakes and caused much heartache along the way but I won’t deny she’s experienced much heartache herself. 

My Mother had a stroke in Jan 15, and so moved closer to where I lived for support. She remained independent and wasn’t in need of care. I did my best I could emotionally but I still found it hard to be around her or move on from the past. In the past few months my Mother contracted a gastric bug and so I stayed away until it passed. Being immune compromised, my Mother insisted I stayed away until she was better. However as she recovered, she irresponsibly took this time to increase her daily intake of alcohol. Her medications caused her to have severe constipation, which had led to a blockage. Without eating or drinking well, she slowly went downhill, until I finally received that phone call from her friend. 

On arriving at my Mother’s flat, I discovered she was confused, vomiting, partially blinded and couldn’t even stand. My first thought was, she’s going to die! The most awful part is rather than being concerned I felt angry. I wished her dead…how could I do this?! My partner and I spent the next 12 hrs with her, making sure she received the right care, dignity and was safe. 

On arriving home I sat down to think. How am I going to care for her, how am I going to arrange care, financial help, addiction support…when I can’t even get out of bed somedays? How can someone who’s chronically sick, look after another sick person?

I decided there and then I’d make sure she saw the right people and then look after myself first and foremost. She doesn’t deserve my help, I thought. However this played on my mind and I sunk deeper into a dark place. I felt guilty that I couldn’t empathise with her. How could she abuse her body so much, when I fight for my health every day?! I felt as though I was letting myself down and everyone I’ve ever supported. I began to think I was a bad person!

I realised I needed to have a really good think and TRY to see it from a carers point of view and not my own for once. My partner has looked after me, without complaint for a long time. I realised that he puts my needs first and that must be so exhausting and emotionally draining. I then thought but WHY does he do this? Does he do it because he has to? He must WANT to do it or he’d resent me…oh dear, this is how I was feeling about my Mother. He does it to ensure I feel cared for, loved, safe, stable and independent when I need to. He wants me to have the best life I can WITH him and if that means putting his own needs aside, then so be it.

I knew then that maybe instead of walking away this time, that my Mother may recover and function better if she knows someone can ’empathise’ and not judge. That someone genuinely cares and loves her. As hard as it was, I then made the necessary phone calls, called her with positivity in my voice and vowed to be there for her. I took hold of her finances and said she can relax and know that everything is being sorted, so she can get better. A friend visited and dyed her hair, I gave her a manicure, stroked her hair and told her I loved her…and felt much better myself.

Within days my Mum was eating better, smiling and talking positively about going home. She fully understood that I needed care put in place for her but would do my best and I believe she no longer feels like she has to fight this alone. This past 3 weeks has been a huge learning curve for me. Not only have I realised that our ability to forgive, truly exists and if we seek hard enough, we can find the empathy needed to feel for another person, even if we have to learn to like them. This ability to love unconditionally, is incredibly powerful. Not only is my Mum healing but so am I!

I also discussed caring as a profession with one of Clinimeds resident bloggers ‘Stephie Simpson’. She cares for Autistic adults. Here’s our brief chat.

Stephie, how do you find caring as a job, when you have been quite unwell yourself over the years?

‘Being a carer as a job can be really hard when you’re sick and struggling, as it isn’t as easy to rearrange a time to go round or shorten how long you are there. Employers also aren’t always as understanding as family and friends you may care for; I’ve done all three and even though all are hard, with family at least you can have a sit down if the pain strikes.’

Stephie, do you find it mentally challenging and how does it make you feel having to get up and care for someone else, when you may need care yourself?
‘Well I just do it because it’s my job and I’ve always felt that working with autistic adults was more of a priority than myself. I used to crawl around work because it was too painful to stand. It can be exhausting but I’ve been doing my job so long it’s like muscle memory’

Stephie, so it gives you purpose and refocuses your mind onto the needs of others? If you didn’t have to work, would you still try?

‘I would but maybe not in care.’

I also wanted to give a few tips about caring for a family member or a friend. Whether you are sick or not, these points apply.

1. Really LISTEN to the person in need and be interested in them and don’t judge.

2. Make them feel comfortable, whether at home or in hospital.

3. Show love and compassion regardless of the situation. Be the bigger person.

4. Try to explain things clearly so they can be a part of their care and plan.

5. Be positive around them.

6. Be selfless but do not neglect your health either (It is possible to manage both if you seek support yourself).

7. Talk to your support network. Don’t hide away and cope alone.

8. Seek advice from local services if needed. Social services, GP, hospital occ health, PALS (if you aren’t getting the help required).

I wanted to briefly touch on the practical side of caring whilst sick. I suffer with arthritis and so it wouldn’t be possible to do everything for my Mum. So I’ve ensured she has the physical element covered and I can maybe cook, clean a little, read to her, sit with her, go out with her. These are all important elements to care. I advise anyone sick who finds themselves in a carer position, to contact local services. For my Mum this was the Stroke Association, Alcoholic Anonymous or Turning Point, Adult social services and the council. Help is out there, so ask for it!

Vanilla Blush. A way of life, not just a brand.

As you may already know, I have HUGE love for Vanilla Blush. 2 years after being introduced to the brand, I thought it was about time I wrote about it! 

My love for Vanilla Blush began on my first home visit from a stoma nurse. I was handed a pack containing a few leaflets and useful contacts. Prior to this all I had received was my stoma supply bag, a leaflet on food and a pat on the back as I left hospital. I was excited to finally see a leaflet that wasn’t about clinical products nor fronted with only an image of someone 50+. I didn’t feel instantly pulled in by the leaflet if I’m honest & actually thought it looked a bit like an Ann Summers one but toned down 😂 and I wasn’t convinced that there was something special about VB but I was intrigued.
The nurses however treated and still treat these items as if they are a luxury and merely an expense to the NHS. I was led to believe this and truly thought that spending £15 – £20 of my own money on  ‘just’ a pair of knickers; was pointless. How wrong I was! 

I can see from a stoma nurses perspective, that they seem like any other knicker we can buy and again this view must be handed down to the GPs and new ostomates but I now know for certain that they are ill advised. They have zero concept of what helps an ostomate in day-to-day life and I intend to stay on the side that is educating them on this matter.

I’ll briefly touch on this issue…

Over the past year our supplies have been audited (see my other blog about this) and our CCGs are taking stoma nurse advise on what they THINK we should have. Sadly I do not support this at all and whilst stoma nurses offer great clinical advice on the anatomy of our stomas, I now believe the best people to advise on our product requirements – is us! As I have stated previously, I do not see a hierarchy between medical professionals and patients. Doctors, nurses and surgeons are trained by the books to assess, tests & treat our conditions. They are not (all) however able to speak from experience of such conditions.

They are the generic biology experts, we are the experts of OUR bodies and OUR symptoms. This applies especially when it comes to stoma products. Sadly due to a few that have abused the system (one that surely the nurses & delivery companies should have been in control of prior to this), we are now treated like children at times. We need assessing on an individual basis and not sent blunt, generic letters that have quite frankly patronised many of us. It is hard enough to find the right products for our skins & lifestyles, let alone have to be told what we can and can’t have by another adult. Fortunately I don’t represent them and from day one have vowed to fight for patients rights to these items! However we’ll leave my anarchy for another day 😉

I’m passionate about body confidence and am aware that acceptance of your post op body, is a huge challenge for many. Just look at how many resources the mental health section already takes up and yet there is no support when it comes to accepting ostomies. Why?! This is something the clinical professionals just can’t understand and so it’s up to people like me to speak up about this. I believe everyone can grow to be confident with their ostomy but there is no set time for each individual. Both investment and support is required from healthcare providers, as well as that of ostomates who have reached a point of acceptance.

Trying Vanilla Blush products, gave me the opportunity to explore my underwear AND outer clothing options and truly face my body with a stoma. I decided to order the prescription underwear, mainly to challenge my nurse and prove that GPs had the ability to empathise, stick to their oath of putting patient wealthfare first and ignore the ‘red tape’. Being the person I am, I had already discussed how I would appreciate my GPs support, in achieving a quality of life. This was something he had seen me go without for 4 years and had been right behind me from day one.

As hoped, the order arrived fairly quickly and I got to experience my first VB beauties. They were made from cotton, which in my eyes is the supreme material for comfort & good skin. Prior to this I had slumped into a habit of wearing Asda cotton pants, along with a basic support belt. I was in so much discomfort and felt frumpy!

Vanilla Blush basics were exactly that but also practical, fitted my curves perfectly and suddenly – my bag was inside my knickers but OFF my skin. It was a wonderful feeling. It was like not having a bag on and I got to sit comfortably in my skinny jeans, without the bag digging in, making me itch or sweat. Now, I love big pants and the more comfort the better but as you know, with comfort often comes an ugly product clinical product. Just look at the shoes available for those of us with arthritis. I’m sexy now in my pants but my feet are doomed to a lifetime shame! These knickers are great to wear by day and even better for comfort by night. No butt cheeks hanging out, no wedgies, no loss of front or back bum coverage and all whilst holding my bag there for a good nights sleep. 

I am lucky to not suffer leaks, however I was far more conscious of them back then. My stoma was merely a few weeks old and the fear was instilled from reading a constant barrage of online negativity. I believed if I leaked, my mattress would meet it’s maker at the dump, my underwear would appear like a nappy full of melted Snickers and my dignity would crawl out of the room with face in hands! However I survived and now know it’s no hardship at all. All expensive material things can be protected, knickers replaced & my dignity is way beyond salvation – so f*ck it! At least I had my Vanilla Blush knickers to place a layer between my skin and my bed, in the hope of less carnage.

It was quite a long time before I tried the lingerie. I was fortunate to be put in touch with Nicola Dames CEO of Vanilla Blush, when she was searching online for ostomates with unique hobbies. I jumped at the opportunity to apply, because by then I was dreaming of modelling this underwear and would work my damned hardest for that opportunity. Can you believe it? The girl who had been conscious of her body for the previous 10 years, was now ready to bite the arm off the CEO of VB, so I could get my ass out for the world! Literally within a few months (op Jul – video shoot Jan), I was feeling sexier than I did at 18, when I had more confidence & bfs than Mr.Kipling had cakes! I was on top of the world.

The shoot wasn’t about underwear but was about intimacy. It was supported by Coloplast with a Valentine’s theme (to see videos check out VBs YouTube page). I went on to do my thing on roller skates and when interviewed, I spoke frankly about how intimacy was no issue for me at all. That having surgery hadn’t changed my relationship and I believed it was largely down to positivity and body confidence. Confidence VB was giving me!

From that point I gained a slight obsession….ok a big one! I contacted Nicola via email stating I was extremely interest in modelling for her one day and although I knew she probably received requests daily, I had the confidence to be bold. I didn’t believe I would be asked but I was proud of myself for believing I could try! 

I began to collect the lingerie and made the most of the great deals they were offering on Fridays and via their monthly money off codes. I decided I would post my pictures in the hope that it would inspire other ostomates and show women with curves or without, that beauty is a state of mind; enhanced by great underwear. The response was CRAZY. 

As positive messages poured in, along with compliments, questions about the products and advice, I found myself feeling like a VB representative but was probably more like Del boy. I LOVED talking about the products that make me feel good. I still do.

As you all know by now, I was fortunate to model the latest range in November 2016, with an amazing team of ostomates. Fate had worked in my favour as many applied and I’m so grateful I was pulled out of that hat. I had cheekily dropped a few names to Nicola of others ostomates I felt would be amazing and when the names were read out, I was ecstatic to be reuniting with my video shoot beauty, Jessica Kitchener and my buddy Steve Cartmail. I met some wonderful ostomates I hadn’t met previously too. All of a sudden, my dream turned into reality and the day was even better than I’d imagined. It was a great experience that I’d do over and over again.

Vanilla Blush offers a variety of basics, lingerie styles, a great range of sizes (with children’s range due in Nov I believe), beautiful colours to match all your bras and even an intimacy range for those shy about their bag still or even a bit kinky…wehaaaay. They provide amazing hernia support wear too and I wear the vests day-to-day, as they aren’t too restrictive and look like a fashion item. Again there is nothing clinical about them at all. I also own swimwear by VB. Both a black, flattering swimsuit and high waist bikini bottoms. They use the same internal pocket design but offer a slimming fit too. I can mix and match my black bikini bottoms with any top I wish. You can get swimsuit and bikinis in a variety of sizes and colours too. 

I have been fortunate to go to their HQ in Glasgow and meet Nicola’s partner and hubby Simon Dames, along with the rest of the amazing team. When ostomates talk to me about Vanilla Blush they tend to mention 3 things. 1) How good the product makes them feel/look, 2) What great value they are and 3) The quality of customer service offered by the team. You can’t say better than that right? 

I now own around 15+ pairs of knickers and won’t stop there. Every pair gives me comfort, helps me start my day on a good foot and tempts me to share my body confidence with the world. I will continue to post pics on my social media, until I’m old and grey…if I make it that far!

Since meeting Nicola, I have continued to support the brand, as a fan and advocate. I am truly inspired by Nicola, who took her experience as a Nurse, sufferer of UC and as an ostomate and chose to turn a negative into a positive. I wanted to do the same with my advocacy and thank Nicola and Simon for supporting me on my journey. I admire Nicola’s vision with VB, her will to help others and her tenacity to make things happen! VB was the first of it’s kind and it’s not just the quality, variety or unique internal pocket that makes it special to me but the life changing effect it has had on my views of my body. Vanilla Blush for me is a way of life and not just a brand.

Look out for their new range later this year and you can sign up to emails via their website http://www.vblush.com. You will receive discount codes, news updates and reminders of your prescription orders. Orders can be made online or over the phone on 0141 7630991. Any queries email sales@vblush.com. Follow both my Facebook, Instagram and Twitter pages (all under Stoma in a Teacup) for images of products and deals. 

Disclaimer – I only support what I truly believe in and write this from the heart. No sponsorship, gifts or money were received for this review. All views and expressions are my own.

Bruised

It’s ok to not be ok, right? 

Well I’m going to fill you in on the past few months. Please note I will be seeking counselling, to discuss the issues surrounding my Mothers drinking & other aspects of my past. For now I am happy to share my present with you, as I’ve always tried to be transparent about my medical, mental & sometimes personal issues, in the hope it will raise awareness.

So where do I begin? It really feels like the past few months have been a dramatic soap episode, left on repeat. I’ve had more stressful things to deal with, than a soap opera drama queen!

Alongside a very long winded period of change and stress for my partner at work, my Mother in law has been through her own period of change and both are anxious people who HATE change. They are the key support that I have in my life and whilst trying to make a conscious effort to do things on my own and support them for once, I seem to have ended up more like Frank Spencer in a pile of mess, rocking in the corner! My body feels beaten inside and my mind is in turmoil. I’m bruised all over. 

I’ve had joint & tendon pain for months now, caused by Psoriatic Arthritis. I’m on a new drug (drug no 10 in 12 years for autoimmune issues), a drug that’s meant to be helping, yet it’s not. I also have side effects to deal with and this one seems to be adding to the extreme fatigue I’m so sadly used to. On top of this my coil dislodged itself. No big deal to many but this is a BIG deal for someone with hormone issues, who flares cyclically (meaning my inflammation is set off by hormone changes during my menstrual cycle). It also sets off a condition called PMDD. I’m not yet officially diagnosed but am in no doubt about it and have discussed my hormone issues with my Gynaecologist. To explain, it’s like a hideous extreme version of PMS. In fact that doesn’t do it justice. I’ll explain my symptoms. 

I spend 2 weeks in bed, basically going mad! I have flu like symptoms, increased pain from my autoimmune conditions and fatigue that means I can sleep around the clock with no relief. I lay there hating the world, not wanting to be near anyone & wanting to just get out of my head or die! This isn’t an exaggeration and it’s really fucking scary. So scary that I knew I couldn’t face another cycle and begged to get a new coil fitted. I sobbed in my fiancés arms and told him that if another cycle comes, I don’t know what I’ll do. The whole thing frightens me so very much! 

Then DURING feeling like this I had to fight to get it resolved. As many know, the system is pretty poor when it comes to getting anything done fast. I don’t usually mind waiting 12 weeks for referrals or a week to see a GP, however if it’s urgent but NOT an A&E type emergency then the chances are YOU’RE SCREWED. 

PMDD is serious. I’ve realised this and accepted instantly that if I didn’t advocate for myself, I could end up dead. I’m a fairly stable person, with depression that stems only from being sick for so long. I have only ever felt like I’ve wanted out of this world once before, when I’d been left merely existing on steroids for 3 years, by my previous Gastroenterologist. 

The hormone sensitivity I have, means that my serotonin levels are also affected and my whole mind & body is out of balance but I can’t help it. It’s like I don’t even know who I am and the more I try to get out of my head, the worse it gets. It’s opened my eyes to the severity of these imbalances and why some take their lives due to certain depression & hormone changing medications.

Anyway I hit the system head on, ready to fight for an appointment at the sexual health clinic but…was reduced to tears by the desk staff. As expected the receptionists just couldn’t grasp why I needed an emergency coil, nor why my GP surgery didn’t have the staff to do it or why using a consultant gynaecologists time was just ridiculous! I mean if I wanted emergency contraception then I could just take the pill or use condoms right?! WRONG! It’s no fun standing in a room full of people, having to explain why I cannot have any other contraception and that it wasn’t about having protected sex, it was about stopping myself from fucking cracking!!! However I wasn’t their concern and whilst questioning the typical nonsensical processes put in by certain NHS departments, I snapped. The advocate in me kicked in and I got angry & got my own way! I turned a 6 week wait, into a 1 DAY wait. Yup…this is why I’m a good advocate!

I returned home hoping things would improve, knowing that I wouldn’t be in bed for the following week, for my body to then bleed for 3 weeks ERGHHHHH. I must add that this is affecting me on top of my arthritis inflammation, bursitis in my hip, my battle against dehydration which is causing major side effects, chronic fatigue, nausea & the growing nutrient deficiencies I have from what looks like malabsorption…but hey I just sit at home all day leisurely *wink*.

Last week I was really struggling, and for some reason just couldn’t sleep. I was nauseas, fatigued, breathless, dizzy and fed up! Then come Thurs eve as I ate my dinner, I was instantly hit by crippling abdominal pain. I was bent double, whilst my bowel bloated and my stoma grew to twice it’s size. It felt hot to touch and incredibly sore. Please no not a blockage!!!

Blockages can be common amongst those with a stoma. Internal adhesions, possible bowel twists or strictures (narrowing’s), can lead to food not passing through the bowel correctly. They can also be caused by food not breaking down and as this is common with those who have an ileostomy, we must be selective with certain foods and CHEW like our lives depend on it. Throughout the past few weeks I had been grabbing food as merely a source to survive. I had no appetite and no enjoyment in eating. So I was lazy and ate things that were risky, especially if consumed on consecutive days. I also didn’t chew well enough. Partly laziness and partly due to the awful inflammation I had in my jaw. 

Sadly Psoriatic Arthritis affects the TMJ (Tempro Manibular Joint). It not only makes the joint swell but causes pain throughout the area due to nerves & sinuses all being packed in. It causes me headaches and I get very sore ears & throat. I really didn’t want to eat whilst it was inflamed and the added nausea I had, added to my troubles.

During this partial blockage, I was passing some liquid output (faeces) but nothing fibrous. I retreated to my safe place – the bath, and proceeded to massage around my stoma and let the hot water soothe me. I drank copious amounts of Pepsi, because the carbonated aspect helps to add pressure into the bowel, in the hope of moving the blockage. Being my first partial blockage, I found myself genuinely anxious, even though I had the knowledge to deal with it. I felt the PTSD creeping in and the fear I had whenever I would be stuck in the bathroom for 2-3 hours at a time, passing blood and mucous from my inflamed rectum. The pain of IBD cramping is hard to describe but some have stated it is worse than labour contractions; I concur. The cramps during a blockage are much the same, with the added fear that if it won’t pass through the stoma, that it will come back the other way!

I stubbornly refused to go to hospital and was adamant I would ride it out at home. I mean if the many people I support, plus members of my support group can handle it, then I bloody well should! The members reassured me when I posted about my situation in the group ‘Making Ostomies Cool’ but I was right back there in my head, when I had UC. I felt alone, so very, very alone and feared I may have caused some damage to my otherwise perfect stoma. I also felt idiotic. I know better! I know what can cause blockages, I advise people regularly…yet I majorly screwed up due to not caring enough about my body. I still don’t care enough right now. 

The blockage took a good 48 hours to pass, with the culprit being hard pieces of coconut, banana & raisin skins from a bowl of Fruit n Fibre. What a complete idiot! What ostomate eats a big bowl of HARD fibre and doesn’t chew?! Any how, it passed and I’ve spent the past 5 days still recovering. My bowel has felt bruised, my stoma is bruised and my ego is bruised. Now with only 2 days until the ball, I’m feeling deflated, unmotivated, full of lurghi, sore and after finding out yesterday that my folate/B12 is low, I’m hopeful my gastro will look at my weight loss & deficiency and confirm I have absorption issues. I’m certain I need nutritional supplement shakes and plenty of rest. I’m starting to wish I’d just gone to hospital during my blockage in the hope of admission to get some bloody care, treatment & decent rest. I’m done with feeling shit.

Add the drama of the Loose Women campaign and how upset I’ve been, I’m feeling a bit sorry for myself. I’m hoping that seeing some of my great friends, followers & inspirational people on Sat, will give me the perk I need!

💋

The fatigue demon

Tired, exhausted, shattered, fatigued, drained, sleepy, drowsy, weary, worn out, sapped, spent, pooped…knackered! These are just a selection of words describing the feeling we all experience, when we have reached our energy limit and need to rest. However, none of these words aptly describe chronic fatigue or the feeling of doing absolutely nothing, yet not having even an iota of strength in your body.

I’ve now been plagued by chronic fatigue for 12 years. I’m not talking about the CFS that is now the modern term for the condition ME (which I’ll add I don’t believe should be called CFS. Those with M.E would add it is much more). I am talking about the fatigue that accompanies a varied range of chronic illnesses and is a debilitating side effect all of its own.

What if I told you that I literally sat drinking tea at my support group Thurs morning (The Sheppey Ostomy Group, Kent) spoke with members and did little more. Then I came home to rest on the sofa whilst my son played on the tablet…yet I felt as though I’d not slept for a week, had ran marathons by day and danced in clubs by night! I could say I felt as though I’d never seen the backs of my eyelids, like I’ve worked a 60 hour week without a break, like I’ve got 15 kids to look after, like I should have achieved so much.. .yet I’d done nothing! No matter how hard or how much I attempt to describe chronic fatigue, I know that those who do not live this nightmare will NEVER get it. All the time you have your own tiredness, you’ll will never truly be able to put yourself in the shoes of someone with severe fatigue. This is because you already have your own assumptions and tiredness to compare.

I could describe many things that sound exhausting to those who do not suffer with chronic fatigue, yet I know that none of these do it justice. I feel that maybe words which spawn much deeper emotion & anguish, would fair better than the dictionaries terms for fatigue. What if I told you that chronic fatigue is torture, it’s agonising, it’s misery, it’s a living nightmare, much like seeing your life dangled in front of your face and watching it go up in flames! It’s like chasing your true self but never catching up. An endless vortex of isolation, fog, confusion, trying to reach the person you know you are but being denied by an invisible demon that you’ll never defeat.

There are ancient tales and beliefs about the feeling we now know as sleep paralysis, whereby a hag, demon or ghostly figure would enter your room and sit on your chest, stiffling your ability to breathe or move. The hag would prevent movement but the demon was slightly more evil. This demon would often be depicted as a succubus (female form) or incubus (male form) and some might attempt to sexually abuse the sleeper and literally suck the life from the victim. As extreme as it sounds, this is how I see chronic fatigue and even sleep itself. Fatigue prevents me moving, breathing freely and rapes my life of the joy I could be experiencing. It renders me paralysed and vulnerable. I also experience sleep paralysis itself; often. This may be a side effect of the palliative level pain relief I am on, or because I am often so fatigued yet too wired to shut off. When sleep does come, it can be full of vivid dreams and often the experience of being paralysed during an activity. Whether I be awake or asleep, I feel tortured of late.

The Nightmare by Henry Fuseli. This painting is a wonderful depiction, maybe even an allegorical representation of the feeling of sleep paralysis. For more info on this interesting topic, read here.

http://www.tate.org.uk/whats-on/tate-britain/exhibition/gothic-nightmares-fuseli-blake-and-romantic-imagination/gothic

My body and the body of those with severe autoimmune conditions, spend their days in conflict with themselves. I used to think that my immune system was broken, dysfunctional yet it is in fact over functional. It does it’s job that little bit too well. Here is a description of A.I conditions. Some less debilitating than others.

http://www.webmd.com/a-to-z-guides/autoimmune-diseases

If you are unfortunate to have more than one, you will be even more troubled by the effects. I personally have both Inflammatory Arthritis and Inflammatory Bowel Disease. I had my Colon and Rectum removed in 2015, after 10 horrible years dealing with the effects of Ulcerative Colitis. Although I have had my large bowel removed, I still experience the extra manifestations of the disease and they are also mimicked by the Psoriatic Arthritis. Psoriatic Arthritis isn’t to be mistaken with the skin condition Psoriasis. Although those with Psoriasis can develop PsA, it is a condition in it’s own right and can have long term destructive effects on your joints.

Of all the effects experienced from having these conditions, I would say chronic fatigue is the one you never truly learn to manage. I won’t say it detracts from the destruction and severity of the others but it is by far the one that steals the biggest part of me. You can medicate pain to loosen it’s grip, you can treat the inflammation of the disease in the hope of easing it or inducing remission, you can receive supplements or infusions for deficiencies caused by the disease(s) and although these efforts are not always successful, they are at least something. With chronic fatigue, there is nothing.

I could sleep for a day, week, month and it wouldn’t change a thing. I could adjust my diet and be the greenest, veganist, paleoist, gluten freeist (sorry making words up!) person alive, yet it wouldn’t change a thing. I could practice mindfulness, try snake oils, talk to a God…NOTHING would change things. These things may serve my mental health but not eradicate this kind of fatigue.

Now some may and will likely question me, but I must stress that what appears to work for one person will not work for another. I am also talking from experience and have tried many variations of diet, I have had many supplements, infusions, snake oils and I feel like I sleep my life away; yet nothing changes. I can go from spending a whole day out with my family enjoying the wonderful life I have, yet crash at any moment. That moment will always chip another part of my spirit away. In that moment I know that no matter what I try, I WILL go down and I will STAY down until my body decides otherwise.

It is the process of my immune system attacking my body, that triggers the fatigue. It is incredibly exhausting fighting yourself day in, day out. Here is an illustration I’ve always found amusing…

Some refer to their fatigue in terms of spoons. The ‘Spoon Theory’ was created by Christine Miserandino and has been adopted globally, as a metaphor for our energy levels with chronic fatigue/illness. I myself have used this many times, to explain why I can or cannot make an arranged event or appointment. Those with chronic illness often find that they begin the day with less or minus spoons, in comparison to someone healthy. This representation also allows us to manage our fatigue and work out how many spoons we have and when best to use them. For a full description, visit Christine’s page here.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Illustration by Colitis Ninja of someone desperate for spoons but fatigue or illness is holding them back. http://www.colitisninja.com

In summary I would like to say that although my life is blighted by chronic fatigue, it is also more enriched with gratitude and a sense of ‘Carpe Diem’ – or seize the day to those who don’t know. I have learned that I cannot prevent nor stop my fatigue, so in turn I do not waste my time fighting it. I have learned to stop justifying myself to others and do what is right for my body and mind. The activity or appointment I may cancel, can be rescheduled. Anything outside of my health or family can wait. I have an appreciation of the good days and a real grasp on priorities. So for anyone new to chronic illness or chronic fatigue, this would be my advice to you…rest when you need to, sleep when you want to, rearrange when you can and apologise never!

Shell 💋

Stoma product cuts – brief overview

The common topic at the moment is CCG cuts (still) and the lack of support for hernia prevention over cure. I have at least 60% of members in my local support group with a hernia and a new member came today just to discuss this. It saddens me that financial ties are preventing key care for not only local ostomates of mine but nationwide.

I allowed myself to comment on a debate yesterday, on the Stomawise private group. Many are receiving letters still (the initiative began over a year ago) banning various accessories from prescriptions. I offered the facts and my views which I will put here also.

1. These letters are not confrontational and explain the facts well. It is not personal.

2. This method of contact may seem like a blanket approach, however it means anyone wanting to question their scripts can get in touch with their stoma nurse (some may not have done so for years) and reassess what is CLINICALLY necessary. It’s the easiest way to audit everybody & provide what you need.

3) GPs are not trained like SNs and so please do not feel they are punishing anyone. It is best for the nurses to appeal on your behalf and inform the GPs of your needs and why.

4) It has been proven that long term use of some accessories isn’t necessary BUT by seeing your nurse and GP, you can query items and get them reinstated if absolutely vital.

5) Ostomy underwear (non supportive) isn’t deemed a necessity. I’m on the fence about this (for confidence reasons) but can say that it’s inexpensive and we were buying our underwear before surgery. This will be very individual and your GP may support your views & needs. I feel that the hernia support wear IS a necessity for prevention as well as maintenance/protection of existing hernias. Again discuss with your nurse & GP. You are currently entitled to 3 pieces of support wear per annum.

6) I believe many will want to keep their sprays, pastes, powders, rings etc and so this again can be discussed with your care providers. Where possible they ask you to try a cheaper brand and I think that’s a small ask considering the current state of our NHS.

7) I do NOT feel that lubricants or deodorisers will ever be a necessity and things like baby oil, essential oils, tic tacs and air fresheners are quite sufficient. I understand those with COPD may find the ostomy brands better but again you must argue this in clinical terms. Not anxiety or confidence sadly. Our poop smells and that’s a fact of life. If you still don’t see this, I urge you to look at the online drugs tariff and look at just how much extra it costs our service.

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8) Just be mindful of ordering only when required and only enough for your needs. Samples are a great way of keeping spare sprays, wipes, powders, pastes etc and so I advise this for travel supplies and back ups.

9) Stoma nurses are on your side and don’t make these decisions! They are being pressured as much as us. The local care commissioning groups are looking at a rise in costs and not taking all elements into account (more diagnosed conditions resulting in ostomy surgery, premature ostomate survival & population living longer), therefore we sadly see this approach. The mistakes of few, affect the accessibility of others. I disagree with the sense of entitlement I too often see also. I for one could never have paid enough tax to cover my medical care & feel grateful that we are not in the current situation of our US ostomates. Be grateful for your care.

10) We will not have to use generic bag choices, so do not panic.

Patience…patient

6pm July 30th, my head was pounding. I began to wake, in a morphine haze and found it hard to adjust to my surroundings. I searched for the comfort of my partners touch but alas it was not to be found. I was in H bay of the Frederick Salmon ward, St.Marks Hospital, Harrow. My partner had gone home the evening before, after I woke from my major operation.

It was a quiet ward with a lingering, pungent smell that I just couldn’t place. (I would later learn it would be the odour of emptying an ostomy bag). I was wheeled into the central bay on one side of the ward, with a lady either side of me and two opposite. Smiles were exchanged briefly, through sad, tired and pained faces. It appeared to be as much as we could muster at this time. I was left by the porters in my home for the next week and took everything in.

Prior to moving here, I had spent the past 24hrs in a high dependency unit. I had been through 8 hours of surgery to remove my entire colon and rectum. My surgery was done via a single incision and so the surgery had taken a bit longer than usual. I had woken from my anaesthetic, feeling excited and eager to see my stoma. I was however too drugged up at this stage to do anything.

I did however wake to find Nurses and Doctors fussing around me and a button thrust into my hands. I was told that this was my morphine and I was to press it when needed. The first button I was given didn’t seem to be working and so I requested it be changed. Now I couldn’t get the hang of the thing and my thumb was getting very sore. The nurse during my pre op had advised me that I should keep pressing the button, to ensure that if I dozed off I would still get a dose. So this is what I did…

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‘Miss Lawes, can I ask that you stop pressing your button so often’, requested the nurse. ‘Erm…I’m So sorry I was told to keep doing so to ensure I get the dose.  Am I doing it wrong?’ I asked, somewhat embarrassed. The nurse chuckled, ‘I understand, however the dose only releases every 5 minutes and all you need to do is press it at least once between each shot and it will set it. Listen for the click of course to confirm’. ‘Thank you so much and I’m sorry for misunderstanding, you must think I’m crazy’, I giggled. ‘Well Miss Lawes, you’ve been here 2 hours and pressed the button over 300 times, with just 32 doses being given. We were wondering if you were ok?’, she said with smiling eyes. Oh how I giggled! I felt very silly and when my partner arrived 5 minutes later, I had to be woken again. That morphine was good stuff!!!

So back to H ward. I had been transported to my ward and woken to find that my fluids had not been hooked up and I was beginning to feel very unwell. I called the nurse for her to hang the bag up, to which she replied ‘I’m already late finishing my shift, you’ll need to ask the next staff nurse’. I was too weak and in too much pain to question her, as she walked away in a hurry. Later the Matron would speak with me and ensure that it would not happen again. The nurse had been a French agency nurse and her bedside manner left much to be desired.

I lay there quietly, not wanting to disturb the strangers on my ward and felt the pain increase and the dehydration setting in. As the minutes ticked past, it was becoming unbearable and the gravity of what I’d been through in the past 24 hours had started to sink in. Whether it was genuine fear or the drugs, I felt incredibly overwhelmed and began to sob hard. I tried to stay quiet, so as not to disturb my neighbours but they would notice regardless of my attempts.

I felt a warm hand on my shoulder and a voice saying ‘oh sweetheart you’re allowed to feel emotional, you’ve been through a big operation. I’m Christine and the other ladies are Lily and Caroline (I can’t recall the other ladies name), and we are all here if you need anything’. I felt instantly comforted and tried to sit, to greet my neighbours. These ladies would be of much comfort over the following days.

Later that afternoon, I decided to take a peak at my new stoma. I had waited a long time for this moment and had put so much hope into this operation. I pulled the covers back and my gown up and took a good look. I wasn’t shocked in any way. I had requested this surgery, after 10 years of suffering with Ulcerative Colitis and too many failed drugs to mention. This was to be a new beginning. I quietly recited to myself ‘I don’t have UC anymore, I don’t have UC anymore’, and again began to cry. Words don’t do this moment justice!

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The next few days I would progress better than I expected and the ladies on my ward would make a huge impact on my recovery. We talked at length about our reasons for our stay and all found common ground in our journeys.

Lily was in her early 30s like me and had been through a real tough time, suffering with severe endometriosis that had destroyed much of her bowel functionality and chances of becoming a parent. She was on TPN tube feeding and no closer to getting better or home. She was married and a good couple of hours from home like myself, so our company was important to her. She isn’t on social media and is quite private with regards to her struggles and I respect that very much still.

Caroline used to be a Police Officer and was largely involved in the Utilitarianism and a huge Celebrity Big Brother fan. She was married with 2 beautiful daughters, one a Barrister and the other a nomadic living the simple life in S.Africa and doted on her only granddaughter. Caroline was a kind soul and had a huge effect on me during the few days we knew each other. She had come in to have surgery due to bowel cancer. She informed me that all hadn’t gone to plan and they had found primary cancer on her liver and she’d woken with a colostomy. She was finding it hard to adjust and found my positive attitude, really helpful. For her an ostomy wasn’t her choice, for me it was and she could appreciate the positive life changing properties of having one.

Caroline worked like a trojan horse to get home and engaged in her daily strolls and gentle physio. We were all incredibly sad but pleased she could go home to her family. I kept in touch online and enjoyed hearing her progress. She had a stair lift fitted and joked about her adversity daily. She was so inspiring.

Just 6 weeks after we met, Caroline decided to seek respite in a hospice. It would be here she would spend her last few days. Laying in the sun with her devoted husband Jim and still being grateful for life’s small beauties. I was very sad to hear of her passing. Her humanitarian views and big heart, inspired me more than I would realise and ultimately it would be Caroline’s encouragement and wise words, that would inspire the birth of Stoma in a Teacup.

Now let’s talk about Christine. Christine was in her 70s and a published poet. This lady was an absolute diamond who kept us all sane with her witty remarks and tantalising conversations about politics, history, feminism, art and poetry. We had many common interests and we found ourselves engaged in interesting conversation most days.

Christine appeared a very strong individual. She joked and smiled to make those around her feel warmth, however it transpired that she had nursed her dying partner just years prior and struggled with loneliness. There was no doubt she had many who cared for her but that one person who would be most engaged with her and keep her fire burning, was no longer with her. I encouraged her to talk about her partner and tell me all about their adventures, interests and discrimination at coming out as gay many years ago. I realised how lucky I had been, to be open about my sexuality in 2003 without much fear. Discrimination is of course still around today but it’s far removed from the stories Christine could tell me. Being secretive was the best way to be it seemed.

Now Christine amusingly called herself the ‘faker’. We were all in for major bowel conditions and she was in due to a rectal prolapse. She believed herself to be unworthy of sympathy, amongst all of us very broken ladies. I never saw it that way and we offered her much comfort during healing and all waited with bated breath for her to pass her first stool post op! She found my openness about poop and bowels quite refreshing and I believe it alleviated much of her embarrassment.

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One particular day I was feeling quite down. I was missing my family, so Christine wrote me a poem and I will keep it forever more. I remind myself of these ladies often and it gives me the drive I need to stay positive and chase my goals. They were all big supporters of my goals and believed I’d do a good job of raising awareness and supporting sufferers like myself. Caroline in fact said it was my destiny.

Christine went home the day before me and we stayed in touch via email. Lily was to stay in hospital a bit longer and I left 6 days after my surgery. We keep in touch via text. She now has a peg and is doing ok. As for Caroline, I think of her often and like to follow her daughter’s incredible work with immigrants. She fights for those with little voice and I admire this so much!

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Then there’s me, still unwell but far knowledgeable about everything and incredibly grateful for my time with these women. Some people touch your life and you see things so differently. I will continue supporting those in need and remember Lily’s sadness, Caroline’s fear and Christine’s loneliness and try my best to help anyone feeling these emotions too. I will also remember their big hearts too.

I’d like to share my poem with you. I hope that if anyone is in hospital now, that this will make you smile like it did me.

Patient

Here where night never falls 

but vague dusk under the ceiling’s moon.

Listen, as these slow breaths

fill the space like darkness.

Pain tunes its instruments

precisely, counts its bars of rest.

Observes its cue to enter

piano or fortissimo.

Be patient, says the moon

outside, while the squishing tress

Free under the clouds repeat

be patient, patient, patient…