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.

http://www.nhsbsa.nhs.uk/PrescriptionServices/4940.aspx
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…

IMG-20170223-WA0007

‘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!

FB_IMG_1476438289490

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.

20150730_094544

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!

20150804_123837

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…

Body Check from Coloplast – Stoma in a Teacup review

Disclaimer: All opinions expressed here are my own. I was not sponsored or endorsed to do this review.

Today I’ve finally found a moment to review both an online facility for ostomates AND a product…hurrah I hear you shout! I shall be writing some more reviews later this week.

Firstly I want to discuss the Body Check from Coloplast. Here is the link.

http://coloplast.to/BodyCheck_FB_Org2
It’s no secret that I’m a big fan of Coloplast. I use a range of their Brava accessories (barrier spray, powder and protective seals) and find the company to be not only forward thinking with their products, but an incredibly well structured and positive company. They are both helpful and supportive of their customers but they encourage and want the best for their staff too. This is equally important to me as a customer, because the ‘bag business’ can appear very competitive at times. 

​Now back to the Body Check! I think it’s a really simple process, created to help those who are unsure of the best bag for them and also those who either dislike or don’t have regular contact with a stoma nurse.

*I would however advise that you always discuss your options with an SCN*

Body Check, helps to log the varying physical areas that contribute to your product needs and choices. I found the facility easy to navigate and pretty self explanatory. The Coloplast website states, that if you ‘Take just 5 minutes to complete the Body Check, we’ll give you some guidance on ostomy appliances that may be better suited to your individual body shape’ and that’s basically what it does!

I went through the process twice, to see the variation of questions and results and think it’s a handy little tool. My only advice is if you have an ileostomy and have quite thick output, still choose ‘liquid’ in the options. This will ensure that drainable bag choices come up. It uses the ‘thick output’ option to determine if you have a colostomy or use closed bags. Maybe another or additional question such as, ‘what kind of ostomy do you have’ would have been clearer. 

That aside, I think it’s worth giving it a try just to see if you’d benefit from any of Coloplast’s products. It’s  clear to see that Coloplast have taken every aspect of bag wear into consideration, when creating and producing their innovative designs. I just wish I could wear the Sensura Mio myself but my skin came up in a rash. I adore the bag design itself and I don’t doubt the research team are ironing out any minor problems as I type!

Here are screenshots of my 1st attempt on the Body Check. You can see my choices in the last screenshot and the advice given. Once completed, you can save or print your profile and opt for samples to be sent to you.

Now go give it a try yourself and if you have any questions, you can also contact the CP team via email, webchat or phone. They also offer Coloplast care as a means of regular communication via email. Through here, you can log how you are feeling and managing your ostomy monthly. If anyone is interested, I will review this also.

Details for both Body Check and Coloplast Care can be found on their website and Facebook page.

Grieving chronic illness

After my recent post where I briefly touched on this topic, I felt I wanted to go into more detail. This is an area I have studied lots over the past 10 years and have experienced through various experiences in my life. Some being death, alcoholism of a loved one and my illnesses.

This process can be applied to any situation where you need to reach acceptance and being diagnosed with chronic illness(es), is a big one. So many struggle through these 5 stages (denial, anger, bargaining, depression and acceptance) and put pressure on themselves to be instantly ‘ok’ with what the future potentially brings. Well as the future is not set in stone, neither will your grief be. Grief is not linear, nor is healing.

You may find you reach a great place of acceptance and no longer carry anger. However a new diagnosis, a flare, a comment from a stranger can put you right back to the beginning. Yes you’ll be more aware of the process but that doesn’t make it any easier. Being chronically sick, is very much like losing a loved one. Except that loved one is you! You mourn your former self and the life you lived, plus the life you envisaged you’d have. You bargain with with ‘what if’s’ and torment yourself further.

I was just 21 when diagnosed with UC but had been suffering for 2 years prior to this. I had 2 years to begin adjusting to the diagnosis, yet I point blank denied what was happening to me. I carried on partying, not sleeping enough and I began blaming external issues for not excelling in my career, or finding it hard to get up in the morning. My attitude was awful & as I started to reach the anger stage, I spent a long time there. This affected my relationships and left me incredibly anxious and depressed.

For me this stage is one I have always found hard to get through. When my parents drinking hugely affected me growing up, I spent the best part of my teenage years, twenties and even up until a few years ago being angry. I believe that anger is often coupled with a lack of control. I was angry over my parents drinking, because there was absolutely nothing I could do to control it. I couldn’t move house or hide from what was around me. Similarly with my diagnosis, I found myself faced with a situation I had zero control over. Eventually I learned that I could make informed choices but only after fighting for my rights to those choices.

I also realised that by following a set of rules, I could ease both the stages of grief & anger, to realise acceptance wasn’t far. This set of rules I gratefully learned from Alateen (children/teenagers of alcholics, support group). This set of rules is known as a prayer to many but I am not religious, so adapt it to suit me.

‘Grant me the SERENITY, to accept the things I cannot change, COURAGE to change the things I can and the WISDOM to know the difference’.

This for me has been key to my survival! I realised that all I could do was TRY to change what I could, be the best I can be as this person with chronic conditions and try to accept it that way…and move on. By dwelling on the fact, that I could no longer be who I was before, nor would my future be as I had planned; I was only causing myself grief. By being angry at the lack of control I had over the situation, I was only hurting myself and if I only used my knowledge and strength to work on this, I could discover the new, better me. That’s courage through wisdom!

This is not to say that I don’t go through these stages in phases. Added diagnosis, flares & raised expectations are often what lead to my downfall. Depression is a stage that seems to hover over me like a cloud. It never truly goes away but some days are brighter than others. It can be distant on a sunny day but as the pain or situation reaches a climax, the grey rain clouds come over and empty themselves on my soul. I continue to grow and work through this stage. I bounce between depression & acceptance almost monthly.

I have also learned a valuable lesson and that is, that I can only rely on those who are consistent in my life. It’s hard because it can make your circle very small but it’s vital to coping and your mental wellbeing. Raised hopes & expectation will only lead to further heartache and it’s often not always family that will be your biggest support. Luckily my immediate family are amazing but I have zero help from extended family. My extended family are my support group members & spoonie friends.

Guilt is the other area that all who live with chronic illness face. We guilt ourselves over our parenting, our careers i.e. if we can or can’t work, our friendships and relationships. We then judge our worth based on this. We shouldn’t! Our illnesses do not have to define us negatively. Being sick has given me a greater sense of empathy, gratitude and the will to do right by others. I may well have continued on a selfish path but my illnesses have made me humble and giving.

Before I was sick I had a path planned for me & I’d do whatever I had to to get there. I was mad at others for my unhappiness & then my illness. I hated conforming to office life once I got there and never fitted in. So it wasn’t all I’d hoped it would be. Yet now I have chosen to be a stay at home Mum & run a local support group, online group, blog & support patients one to one. I now know I am worth so much more because my life is precious and not for conforming, blaming others or holding onto anger. I can do good in the world and THAT is just a fraction of my worth!

I soon realised after the birth of my children, that I wanted to show them there is strength to be found through adversity. I’m not after some martyr story but to show them that by keeping good company, being kind, loved & empowering themselves with knowledge, that they too can be strong enough to both offer support & receive it if necessary. It is not weakness to ask for help, it is not attention seeking to educate others about your condition(s), it is not giving up if you embrace a bad day…it is following those rules and knowing what you can and can’t control or change.
💋

Chronically unemployed!

​A friend shared the link below and I must confess it struck a cord, so much so I had a good cry. I often hide how not working makes me feel, it’s easier than dreaming that one day I’ll be able to have a full or part time paid job. 

https://themighty.com/2016/12/chronic-pain-judge-me-for-not-working/

Personally I worked for over 7 years sick and it was one of the hardest things to do. Not only feeling like I could crawl through the office door daily but the response of a few colleagues over the years, pretty much left me miserable and traumatised. Retail didn’t understand, office colleagues had no empathy and pub hours don’t yield for sickness. Varied roles just didn’t agree with my UC.

Comments over the years like ‘you’ve got it forever so just get on with it’, ‘suck it up’ or ‘well I’ve had this poxy cold for 2 wks and haven’t complained’ made me come home and cry. It was even worse when someone would compare my suffering to that of others THEY deemed as ‘worse off’. There’s NOTHING worse than your personal battle of suffering daily, forever…nothing. It’s not fair to compare.

I happily left employment officially in 2014 after completing my maternity leave. Removing the mental battle was the best choice for me. For someone that ‘didn’t look sick’, I had my Colon removed only a year after leaving employment…so I really wasn’t sick was I?! 

Regardless of any bitterness I carry, I’m definitely happy to not be grilled by HR or managers, who have made me feel like a liar over the years. To those that listened and got me the support I needed, thank you. To those that said I was ‘unreliable’, or ‘no different from anyone else’ F*CK YOU! I’ve wanted to say that for years 😊 

I truly hope that ALL my past employers do their homework and adhere to the 2010 Disability Discrimination Act and understand how severe IBD is and see the overall impact chronic illness can have. I offered enough info and insight into the illness, they’d be stupid not to! If they don’t…I just might be the advocate behind THAT employee wanting advice, so they better be ready! 

Sadly I see many IBD sufferers struggling with understanding from their employees. This needs to change. For anyone needing advice on this subject, go to the links below. There is advice for students too on the CCUK website.

https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/employment-ibd-a-guide-for-employers
https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/employment-ibd-a-guide-for-employees

Sadly we struggle on what little money I receive from child tax credit and I only began receiving PIP late last year, after a 2 year slog. It’s been a huge strain on my partner and a huge hit to my ego. I took pride in my ability to problem solve and work fast and efficiently. I struggle to remember what I did 5 minutes ago now. I hate not being able to provide for my family and dislike it technically being James’ money. He actually likes me being at home but of course if I could and wanted to work, he’d support me.

Not working comes with its own hardship. I get lonely, bored, struggle with my toddler and feel useless. This is one reason I started blogging and using my time to support others. It takes commitment but on my terms. If I’m sick, I can rest. Being sick IS a job itself, as perfectly put in the article above. It’s even more so with children who rely on you. 

Maybe one day I’ll achieve my career dreams but for now I accept that it may never happen. If I could advocate for ostomates and IBD sufferers as a job, I absolutely would. One thing leaving work has taught me, is that I absolutely wouldn’t give what precious energy I have to a corporate company full of judgemental people, ever again. I’d rather offer my time to those in need and those who appreciate it! 

💋

Skin care and products, I do it my way.

​I’m noticing an increasing amount of posts this winter, about issues with sore skin and leaks. Who knows if the cold is having an affect but it’s super important to warm the bag before sticking and refraining from too much indulgence near to bedtime.

I thought as I’m always recommending Saltair lotion for sore skin, that I’d share the link and details. Plus I will share links to the products I use each bag change. These can be seen in the videos I posted last week.

NOW, I have to say that I find it odd that the industry is lacking in healing products and tends to opt for prevention and protection only. Of course prevention is key but unless a patient is really clued up on whether or not their methods are working, there will come times that sore skin needs treating quickly. So many of you rely on Stoma Nurse knowledge, that you fear trying things for yourself. I think this largely boils down to confidence and feeling that surely we can’t know better than the ‘professionals’…well actually sometimes we can! 

I find it incredibly patronising to be told by another adult, how to look after my body. I’ve lived in my skin for 32 years and know what works and what doesnt generally. I see my stoma area as just another part of my body. It doesn’t have magical properties and logic tells me not to use acidic, oily or greasy products. A quick read up on what faecal output consists of and what affect it has on the skin, you can then get an idea of what may help to reverse the skin breakdown or heal it, before changing your protection methods.

I have noticed a few ostomates refer to OTC products like Calamine (antibacterial, antiseptic and antipruritic) or Gaviscon (antacid) and this is great. Such simple household medicines that are very effective. Those with severe skin issues like fungal infections, bacterial infections, cellulitis or a severe allergies, must of course seek oral or topical medications via their stoma nurses or dermatologist.

To reassure you, I have spoken with a few stoma nurses about the lotion I use and each has had great things to say. The SNs at UCLH (University College London Hospital) told me that the cooling effect and ingredients are perfect for those sore areas. The logic and science behind this lotion and things like Calamine or Gaviscon, is quite simple. Our output is very acidic and can burn the skin on contact. These products are often alkaline with anti-itch properties, so can help return the skin back to its natural pH to stop the breakdown. Then it can heal.

I use this lotion prior to a method I was taught, called ‘crusting’. I ‘crust up’ with Coloplast Brava accessories. I use Brava barrier spray and Brava powder. I also believe that the least contact you have with the skin, the better. Constantly rubbing and removing skin cells will eventually cause soreness, so I avoid wet wipes of all kinds (barrier or cleaning) and only use warm water on dry wipes for cleaning. In fact I usually always bathe or shower, so rarely use wipes at all!

Of course everyone uses different products/methods and once you’ve found something that works…don’t change it. However many trusts are cutting budgets and the less products used the better. It’s not about our rights being stopped and more about ostomates understanding the huge cost to the NHS. We all have to play a part in cutting costs (regardless of how other areas rinse the system) and saving the service. 

I dislike the word ‘entitled’ because I feel it sounds ‘bratty’ but I do understand patient frustration when being denied a product they get on with. If you’ve at least tried the cheaper option or tried to cut costs elsewhere by maybe not using deodorisers and buying your own air fresheners or tic tacs, then by all means you should ask your GP for the product you get on with. However no one is entitled to ‘hoard’ or just order too many bags in advance for the sake of it. Samples are available as spares, so try not to order every product available either. It’s not like regular shopping! 

To put things into perspective, a box  of bags can cost anything from £60-£120 PER BOX. For those changing daily, £80 boxes over a month would be £240! I choose to get Brava products which are one of the best, because I use only 2 accessories along with adhesive remover but change my  bag every 5-7 days. A box can last me over 2 months. So £240 per month vs my £80 every 2 months. 

Moving back to accessories, I’d like to add a few points that really bug me when discussing accessories, so read up and take note. This may help you order wisely!

Paste is used ONLY for filling in dips and gaps to make the bag base stick better, not for healing as it contains alcohol which will burn.

Powder is for drying/absorption of peristomal skin. This helps the bag stick and PREVENT sore skin. Aids healing.

Barrier wipes and sprays are to create a protective layer and for healing peristomal skin.

Cavilon isn’t some unique magical product. Cavilon is just the brand name and it’s one of the most expensive available and used regularly in the US I believe. Orahesive powder is the generic term used for drying powders used to aid sticking and each supplier e.g Dansac, Coloplast, Pelican, Salts, Convatec, Hollister etc will have their own variety. 

Other products terms that are the same but cause confusion, are as follows:

Baseplate, wafer, flange – all used to describe the sticking area of the bag.

Ring, seal, washer – all used to describe the protective rings used around the stoma and under the bag base.

Base extender, tape, strips, bananas, half moons – all terms used for the half moon sticky tape used around the bag base. These can prolong sticking or increase the bag sticking area.

Here are the links for each item I use. If you already have a brand of barrier spray and powder, give those a try. Alternatively rings/seals can be good for protection too but you may experience seapage under them, so maybe try the crusting method prior to putting one on.

Keep an eye out for my review of the new Brava protective seals this week!

http://www.salts.co.uk/Our-Products/Stoma-Solutions/Product/SaltAir-Lotion.aspx

https://www.coloplast.co.uk/brava-skin-barrier-en-gb.aspx

https://www.coloplast.co.uk/brava-powder-2-en-gb.aspx
Shell 💋

Arthritis, what does it really mean?

​I found this great 8 point post about arthritis. It explains how the term ‘arthritis’ is an umbrella term and isn’t just ‘wear and tear’ of joints like many believe. Osteoarthritis is the ‘wear nd tear form’ mostly seen in older people or those who’ve had long term steroid use. However there are forms of arthritis that attack people of all ages, even the very young. These forms of arthritis are very different to osteoarthritis and things like hyper mobility (others conditions mentioned in article). So please have a read and I’ll then continue to tell you my arthritis story.

https://m.facebook.com/arthritisresearchuk/posts/1316362638384362

I rarely post about my struggles with arthritis as to be honest I’m still trying to accept and adapt to it. It’s like nothing I’ve faced before, in that I’ve lost all hope completely this time!  It’s getting harder to function and my ability to do things is hindered during flares. I feel embarassed if I ‘need’ my stick, so I stay at home instead. It was first believed 3 years ago that I had a form called ‘enteropathic arthritis’, which is directly linked to Inflammatory Bowel Disease. It was later confirmed to be psoriatic arthritis but without any major skin manifestations. I have had thin often peeling nails, a sore/scabby scalp and areas of psoriasis on my elbows over the years but nothing as bad as my Father has experienced. 

It’s likely I have developed PsA due to the genetic connection from my Father, who is also being treated for PsA at the moment. It’s taken many years for his psoriasis to affect his body internally and to the point of needing treating. I know he prefers to try natural methods of healing but lately it’s taken a hold and so he’s trying Methotrexate in the hope it keeps him active. Luckily I have some experience of the drugs used and can be a source of knowledge. My Father has a farm in North Finland and needs to be mobile, especially to prepare for the winter months, so it’s important that these meds work for him.

Now my PsA symptoms were largely controlled (or masked) by 3 years of steroid use for my UC. It reared it’s ugly head fully after the removal of my Colon. My dreams of being pain free were short lived and I’m struggling more than ever before. You might see me walking about one day, even attempt to skate again…but largely I’m hibernating, wondering if I’ll ever be in remission. I can’t sleep at night due to tendon and muscle inflammation all over. My hips have fluid swellings known as bursa’s (trochanteric bursitis), which I’m receiving physiotherapy for. These have formed from the scarring of inflamed tendons and the area needs remobilising. 

Sadly training to play roller derby appears to have made it worse, so I’ve been on a 4, maybe 5 month hiatus and I’m not sure it’s physically viable to continue anymore. This will be discussed at my next rheumatologist appointment, along with increasing or changing my biological medication. I’m terribly sad about how much it’s hindering my life already and I’ll be devastated if I have to give roller derby up fully but I must put my health first.

The drug I currently use is known as Humira or Adalimumab. Here is a description from the Humira website. 

‘PsA has been linked to an overproduction of certain proteins, including one called TNF. In people with PsA, extra TNF contributes to inflammation in the joints. HUMIRA targets and helps block a source of inflammation that contributes to the joint pain and skin symptoms of psoriatic arthritis.

HUMIRA targets and helps block TNF-alpha production, reducing inflammation. Because TNF blockers, including HUMIRA, affect the immune system, they can lower the ability to fight infections and may cause other serious side effects.’

Many will recognise this as a drug commonly used for IBD too. These conditions are caused by the same inflammatory process and so by removing my Colon, they of course didn’t change the way my immune system functions. I’m now being attacked elsewhere!

I have been on this drug since March but didn’t get a good run with it until June. The problem is, if you get a viral or bacterial infection (which is common due to how the drug lowers your immune system), you have to skip injections. I inject once a fortnight at the moment and I desperately need to be having it regularly. Between March and June, I just couldn’t get well enough to use it regularly. Since June it has been much better and I’ve cheekily carried on my injections on ‘lower’ weeks, merely because I can’t get out of bed without it. 

The first 48 hrs after injecting, you experience what is known as a Humira ‘hangover’. You experience extreme fatigue and pain…but once that passes, it’s like a weight is lifted. For 7 days after the hangover I get some better days. My tendons, muscles and joints feel less inflamed, stiff and sensitive. It’s wonderful! However this stops on day 10, when it’s meant to see me through the 2 weeks. My breakthrough pain is horrific and I end up back to square one. Due to this fluctuation it never feels like I’ll be in remission. 

I intend to ask my rheumatologist for another steroid injection in my hip but I’ve already had 3 this year, so it may not be possible. I may also be able to have a systemic steroid injection, which helps widespread inflammation but without the need to ingest steroids…the devils tic tacs. I’m hoping that by explaining my pain levels and lack of mobility and energy, we can consider another…better biologic. 

So for now I continue as I am and try to function with a pain riddled body. I’m hoping December brings new plans for both my hiatus hernia and arthritis. I need some hope for the New Year ahead.

Shell 💋

Uphill battles, my inspiration and theatre trip excitement!

​I had a really rough day Friday and after changing my pain patch and doing my Humira injection, I woke Saturday, to a body not wanting to function BUT I made myself get out of the house (by 1pm) and visited the shops to get new bedding for my children’s new exciting bed; which we were to assemble later that day. I had planned on doing a food shop and going to a pals 40th but my body said NO WAY! I went to bed feeling very low and wondering how I’d complete all my jobs this weekend and the week ahead. It’s just getting harder and harder and I felt like

Then…I wake Sunday to minimal pain and some energy.I couldn’t believe it! I’ve spent the past 2 months of Sundays in bed and missing out on family time, roller derby and getting jobs done. So I decided to visit my roller derby guys at training and even put my skates on for a short, gentle time. I left feeling pleased I can still do the skills I’ve spent nearly 2 years doing, I can live with not competing as long as I can still skate 😊

I also had a half decent appetite and managed something resembling a breakfast, lunch and glorious roast dinner cooked by my mother in law. My fatigue crash came shortly after dinner but I refused to be beaten yet. So we stopped to do a brief food shop and returned home deciding to have a much needed clear out of the toy boxes. We’d assembled the new bed and so I took the opportunity to move things around and make space for Santa’s pile of new things. I sat to have a lovely cup of tea, caught up on my messages and went to bed finally at 1am…not sleeping until 2am.

As you can imagine I’d already decided that today would be a write off. Surely with using so much energy yesterday and being woken 4 times by my children, I was bound to wake up stiff, in pain and exhausted. Nope! I was tired but still feeling motivated to get things done.
So far today I have fed and dressed my children, made a lovely lunch for my significant other, put a stew in the slow cooker, taken food options for my support group meal, put washing on and made some calls. I’m feeling pretty accomplished and hoping this whole week can be a better one!

I’m visiting my best pal and ostomy twin, Katryna (of Kat’s Bag of Crap andthe Coloplast brand ambassador) this weekend. Kat and I are so unbelievably similar, even our bad and better days fall into sync. I shall be watching her perform in a production of Rent, Directed by the legendary Mykal Rand of Starlight Express fame. Nothing gives me more joy than seeing another ostomate, doing what they love and giving life their all. Katryna is resilient, motivated, inspirational and so talented…and I get to see all of this as a loved one; for this I am truly grateful. Kat has seen me through some tough days and I’d now be lost without her love and support. 

This incredible lady has been very busy these past few months. Not only being a mother, partner and chronically sick individual but she’s been rehearsing for Rent AND writing her very own play, aptly named ‘Kats Bag of Crap’. The lucky audience will get to see the person I see. You will laugh and cry whilst she relives her story on stage. Tickets for her show are now on sale and look out for the forthcoming  interview I will be doing with the lady herself. I urge every theatre fan, mother, lover, fighter, ostomate or passionate soul to go see this production. It’s being directed by the fabulous Charita Jones, aka Momma Cherri. Kat comes from talented stock with not only this extremely talented Mother but her Father is no other than the legendary Ray Shell…original Rusty in Starlight Express! I literally fangirl all over her family 😂

So fingers crossed for more better days and an energetic weekend with a great friend!

Shell

💋

My journey continues…

Morning all!

I haven’t posted much personal stuff lately. I’m still finding it very difficult to balance life and sickness, even after 11 years! However I thought I’d update everyone as it is Crohns and Colitis awareness week soon and without my IBD journey, I wouldn’t be here to support you guys!

As many of you know, I was diagnosed with UC over 10 years ago. I had a long journey of failings from my local consultant and MANY drug failures too. Only at the end of 2014 did I receive the support I needed, via St.Marks Hospital in Harrow, London. I tried another medication but finally decided to ask for surgery in early 2015. In July 2015, I had my colon and rectum removed and an end ileostomy formed. I am a barbie butt baggie FOREVER. I couldn’t have been happier and I love my stoma ‘Norm’.

I had support from ostomates before my surgery and so faced this journey with positivity. However it’s not like this for everyone and I continue to meet and hear from individuals who face surgery with uncertainty and fear, or wake from emergency surgery feeling like life is over. IT DOESN’T HAVE TO BE THIS WAY and I’ve pledged to make sure that anyone I speak to, hear positive and inspirational stories to help them through. 

Recently I have seen a handful of people go from scared individuals, to the most bad ass ostomates ever. They’re sharing their story, pictures of their bag and pledging to support people too. I couldn’t be happier. I will continue to work with the various ostomy suppliers and organisations to support, guide and even encourage change where needed…for all of you! I will share as much information as possible and am ALWAYS here to answer your messages.

I love helping everyone else…I just can’t seem to help myself right now. My hiatus hernia that formed due to long term use of oral meds; eroding my stomach lining, is causing nausea 24/7 and pain. I’m finding it hard to eat or drink and am subsequently losing weight fast. I’m currently 55 kilos from 66 before surgery. I’m not yet visually wasting away but I am feeling weaker, more fatigued and struggling with hydration too. I see my GI on Dec 15th to discuss the next step. I’m now half a stone lighter than the pic on the left!

I’m overdue blood tests to see how my Humira is doing. I use this biologic to treat psoriatic arthritis, which appears to be the actual root of my auto immune issues due to inheriting it from my Father. I’m constantly in pain and relying on Fentanyl patches to keep me mobile. I’m not feeling the full effect anymore and fear the opiate is doing me more harm than good. I’m running out of choices with pain meds, so may have to just deal with it. 
I don’t sleep well due to the pain in both hips and my lower back. Scarring from inflamed tendons has led to fluid swellings (bursitis) and I’ve been receiving physiotherapy for this. I’ve had a few steroid injections into my hip and systemically into my back but they only last a few weeks. After 3 years of constant flaring with my UC and now the arthritis flaring since surgery, I’m beginning to wonder if I’ll ever gain remission!

On a plus note I’m waiting for my appointment to see the hand surgeon to operate on my carpal tunnel. My hands are bad enough from the arthritis but my mobility is being majorly affected by the CT too. Writing…typing…chopping…it all hurts LOTS! It also appears my coil has settled well and I’m hoping to see no more Endometriosis appear! 

I intend to ask for some more support re my mental health too. I’m carrying the burden of illness, alongside 2 toddlers that require my presence and positivity. My partner is keeping us all afloat but slowly drowning himself and I refuse to be the cause of that. We have always got through the hardest times and we will again, except I think this time we need to be realistic about my future and make plans to increase permanent support for our family. I thank everyone who has and does help my family continually!

To TRY and help myself, I took a break from writing on my blog, playing roller derby and engaging too much on social media. I felt I was pressurising myself unnecessarily to achieve great things, engage with others and be ‘normal’ and was therefore feeling worse when I failed. Now I’m doing everything organically instead and taking one day at a time, so if I’m quiet you know it’s a bad day! 

I’m also still struggling to get up this morning. Hopefully this tea will work it’s magic!

Shell 💋