My blog posts have had a very negative tone over the last few weeks which I hate to be the case, but of late life has just been horrendous. Every time I try to do something that will help one problem, another issue arises.
Last week I had an iron infusion which I have waited months for; I’ve had one before which was a couple of years ago and I was an inpatient at the time so I don’t really remember any impacts it had. However, after the one I had last week I have been so poorly. I’ve been constantly going hot and cold, having to change my pyjamas multiple times a day as I’ve been dripping with sweat yet shivering, been more exhausted than normal, had severe stomach pain and gastro issues including problems with my stoma etc.
This meant that all the plans that I had for last weekend and had been looking forward to had to be cancelled. On Saturday I was meant to be going to an afternoon tea for a family friends’ 90th birthday, and on Sunday it was my Nan’s birthday for which we were meant to be going out for a family meal, yet I could do none of it. I had to miss the afternoon tea entirely, as did my Mum, as she had to stay with me to look after me, and on Sunday we had to cancel the meal. In the end, just my sister and her boyfriend took my Nan out for lunch whilst I stayed on the sofa. They popped in afterwards so I could see my Nan open her presents although I really struggled to even stay awake. I was absolutely gutted.
To be frank, life is shit at the moment, and something as simple as just leaving the house to celebrate a loved ones birthday can’t be done because of my ill health. We can’t be totally sure that it is a reaction to the iron, but it is what it is thought to be due to.
Despite this, I’ve had to get out for a couple of important appointments this week by which, fortunately, my symptoms had reduced enough for me to leave the house although I still feel far from back to ‘normal’. On Wednesday I was supposed to see my colorectal surgeon as I’ve been having issues with waste bypassing my stoma, and urgency and accidents have returned. However, despite my Mum taking the day off of work, me being assured that we would see the consultant himself after a wasted visit to a registrar last month, and us making the journey to UCLH, the consultant had decided to get cover for his clinic at the last minute, and so yet again I saw another registrar. With all due respect, this doctor had no idea of my case, no idea when I had my ileostomy formed and also admitted to us that he didn’t know anything about Ehlers-Danlos Syndrome. All I feel like I got out of the appointment was having educated one extra person about EDS, but I’ve now been put on the waiting list to have my ileostomy converted to an end ileostomy rather than the loop that it currently is, which will hopefully stop the distressing problems I’m currently dealing with daily.
On Thursday (yesterday) I had to endure yet another colonoscopy. I have lost count of the number of these that I have been through, and yet they’re still as stressful as ever. I was told that the one I had in December would be to give us the answers we needed, however apparently the results weren’t sufficient and so it had to be repeated only three months later; the thought that this one could have been avoided made it even harder to cope with. Yesterday, it was a struggle to get through, the pain was so severe and despite the sedation and pain meds, it didn’t even take the edge off of it. Many ulcers, bleeding and inflammation was found, and it is thought to be either a flare of my Crohn’s disease or diversion colitis due to part of my bowel not being in use although we have to wait for biopsy results for this to be confirmed either way.
This week has been so difficult to deal with, and every time I think things can only get better, life seems to take it as a challenge to prove me wrong. I now have a cold and sore throat which I always find difficult to deal with on top of my everyday symptoms, but in addition to that and what I’m finding really hard to cope with is the fact that I’m still having night sweats and really severe calf pain which we still don’t have a real cause for. Yet again, I’ve had to cancel all my plans for this weekend, and whilst I’m fortunate that Ollie and Thea have been understanding, I was so looking forward to what we had planned. Yet again, all I’m doing is letting people down.
I’m truly not sure how much more I can cope with, I’m absolutely desperate for a break yet things have just been relentless. I crave normality, I crave some days of ‘better’ health just so I can have some sort of a life rather than being stuck indoors on the sofa. I try to remain hopeful, hopeful that there are some better days ahead and life won’t always be as unbearable as this, but things just have to improve soon. All I do is let those around me down; I can’t keep plans, I am unable to do anything apart from stay indoors, and I’m just constantly ill – I don’t understand why anyone would want to stick around. I’m praying things get better, they have to soon because I just can’t carry on like this…