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!