Tag: flare up

E is for Energy

Like most chronically ill people, I know of, and use to some extent, the Spoon Theory to explain my fatigue. If you don’t know, Spoon Theory is the idea that when you are chronically ill or have chronic fatigue, you only have so much energy, or Spoons, to do tasks. Each task taking up a different number of spoons. For example, say you wake up and you have five spoons to spend that day. Having a shower and getting dressed may take up one or it may take up two, depending on your condition. Let’s say it takes up two. You now have three left to use at work, come home and make dinner. But if works takes up three (or in most cases more) spoons, you won’t have any left to make dinner. So, do you have the shower or not?

This is one of the many issues chronically ill people, or “Spoonies” have to deal on a day by day basis. 

Some days, I’m ok; I have enough spoons for work, a shower and dinner. But some days, like today, I barely have enough to get dressed. I needed to shower and wash my hair. This is something I really don’t like putting off because it makes me feel worse if I do. So of course I forced myself to shower this morning. Even as I sit here and write this though, I am feeling drained, and worried I’m going to struggle at work. (and its not even 7am yet). 

This is my reality. This is why I sometimes cancel plans last minute. This is why, some days, I can do nothing more than get dressed and sit on my computer all day playing games. 

And it’s not just me; a lot of Spoonies face the same difficulties. We all get bad days but when your a Spoonie, your bad days can be so much worse. 

Please remember to be kind. If someone says they are fatigued, they probably mean it. There is a big difference between being tired and being fatigued.

 … 

Please note: you don’t have to be chronically ill to have Spoon Theory apply to you. It is entirely ok to relate to Spoonies even if you are otherwise healthy. 

Also note, there are a lot of variations on Spoon Theory, such as the Match Box and Old Phone Battery.  Thanks for reading. 

C is for Catch-Up

Again, let me apologise for being MIA for a bit. The truth is, I’ve been struggling a lot recently and blogging hasn’t been that high on my priority list. That being said, let me catch you up on what’s been going on with me lately.


As mentioned in a previous post, brain fog is a very real and serious side-effect of being chronically ill. I don’t usually suffer with it but the last few months have been quite different…


It started with a drop in my appetite. A normal day for me would consist of having lunch and dinner, and maybe breakfast in the morning if I felt like it. But I began to not feel hungry, and the idea of food would make me feel sick or nauseous. I began eating less and less until it began affecting my energy levels at work. I spoke to my IBD team who recommended I started back on the modulen. This lasted for about a week before I couldn’t manage it anymore and reintroduced solid food alongside the modulen until I was able to eat a bit more and could cut out the liquid nutrition all together. However, I soon realised I had “shrunk” my stomach; I wasn’t able to eat a full meal anymore. I started eating little and often, around five to six small meals a day. This has sort of worked but it’s not always possible to eat midmorning or afternoon, especially when I’m working, so I don’t always get enough food. This has continued for some time now and I’m still trying to get my appetite back to normal so that I might be able to eat more.


Lately though, this has proved difficult; because I haven’t been eating that well, I’ve began suffering with fatigue. This fatigue has caused me to be unable to do much after work or on my days off, leaving me incapable of properly taking care of myself.


This drop in appetite and increased fatigue has left me feeling drained and I’ve begun to struggle mentally. I won’t go into details but it’s got to the point that I’ve reached out to Steps2wellbeing, a UK-based mental health organisation who I have used in the past and may have mentioned before. The initial triage session went well and I’m on a waiting list to start CBT (Cognitive Behavioural Therapy). I’m not sure if it’ll work but I feel it’s worth trying because that’s better than doing nothing.


As for my physical health, that’s begun to decline again and I have, once again, been signed off from work. I don’t know how long I’ll need but even my works occupational health team believes I need time off so I’ll take their advise. I’ve had a blood test as well as a faecal calprotectin. These have shown that some of my inflammation markers are a little raised but not a lot else. And to make this even better, I was admitted to hospital on Monday.


⛔ TMI Warning for this next bit! Please don’t read any further if talk of poop or other bodily secessions grosses you out. Thank you for reading this far and I how you are staying safe. ⛔


OK, so since being admitted via a&e, I have had a CT scan as well as an xray, which have shown that I have inflammation in my small intestine (mostly the lower part, below my stoma) but thankfully no twist, like my GP suspected. The CT also showed that there was something in both my old jpouch and the part of bowel going up towards the stoma (most likely mucous) which was making them both a bit distended. My surgeon has recommended I start antibiotics to help control the inflammation (which I have) and, hopefully, whatever is in the old pouch will eventually come out via my back passage. I started the antibiotics Tuesday but it’s still early days yet.


Eventually, I’ll have the excess bowel removed. My surgeon said that should stop (or at least reduce) the inflammation in my small intestine. Obviously, I can’t have that done now due to Covid, but maybe in six or so months time.


So that’s what’s been happening with me recently. If you made it this far, thank you. I appreciate you reading my rambling posts. This one in particular is a bit disjointed because I wrote over several weeks where a lot was going on, making it hard to concentrate. I’m sorry if some parts didn’t make a lot of sense but the brain fog is pretty strong right now. Anyway, thank you again for reading and I hope you are staying safe.

Obligatory Covid-19 related post (kinda)

So, as we all know, there is a pandemic at the moment. As someone with a chronic illness (and as someone whose partner has active asthma), I am concerned. I don’t want to catch coronavirus and I certainly don’t want my partner catching it. If we did, it would be extremely serious for us both.

I work for the NHS and so am classified as a key worker (as is my partner). Where he can work from home, I can not. I am currently at home due to an IBD flare-up (which I’ll get into in a bit), but I will eventually need to go back to work. The thing is, even though my work’s Occupational Health has advised I stay away from patient interaction, my job is patient-facing, so I’m not sure what I’ll be able to do when I do go back. And on top of that, what if I pick up coronavirus on my way home or from an asymptomatic colleague? There’s not a lot I can do other than opt to self-isolate. This will have to be something I discuss with my manager when I return to work.

As for the flare-up, it started about three weeks ago. We had just got back from the Netherlands and I was starting to experience stomach cramps. I put this down to having tensed during the flights as I dislike flying, namely take-off and turbulence. I thought they’d go away after a bit but no, they kept getting worse. Two weeks ago, it got to a point where I was having to sit down because I would get nauseous if I was stood for too long. That’s when the fatigue began to set in, to a point that my colleagues where starting to notice. They would tell me that I didn’t look well and that I should go home. I didn’t want to. The fact is, I haven’t been at this job for a year yet and my probation period had already been extended due to two instances of sickness (both of which I was hospitalised). If I called in sick, that would be three instances within the first nine months of my employment and I didn’t want to risk losing my job (despite all the reassurances from my colleagues to the contrary).

Come Friday of that week, and I am feeling awful. Thankfully, Friday afternoons are quiet for me at work so I didn’t have to do a lot. I decided I would use the weekend to rest and evaluate my condition Monday morning. I think they saw it coming as my manager was not surprised when I called in. I was signed off for two weeks. That two weeks is almost up and, unfortunately, I am not feeling much better. If anything, the pain is worse. I’ll be speaking to my GP again Monday to extend my sick note. It sucks but I have been advised by my GI to stay at home if I am experiencing flare symptoms. Hopefully, things will settle down soon and I’ll feel well enough to return to work.

Anyway, to everyone who reads this, whether you have a chronic illness or not, stay safe.

I’ve called the helpline. I know they won’t really be able to do a lot because I have my appointment with my GI next Monday, but I just feel like I need to talk to a nurse; the last few days haven’t been good.
I have to have a blood test at the hospital too so I’m going to be busy this morning. I’m not planning on doing a lot this afternoon though; I’m not sleeping enough so I might try and have a nap after lunch.

Just an update

I’ve had an xray on my stomach which hasn’t shown anything bad. They want to see if I react positively to the steroids over the next couple of days but if not, they’re going to do yet another flexi and possibly change my infusion drug. The doctor said it could be due to hypersensitivity within my gut after being inflamed for a while.

Also, my cannula is hurting when they give me my steroids through it so they’re going to change it in a little while.

Thank you to @natsufatsu and @sabinasanfanfic for your kind messages.

Feeling like death warmed up. I’ve been feeling worse and worse over the last four days so I’ve called the helpline in hopes of getting some answers tomorrow. I’ve barely eaten anything today and I spent most of it sleeping.

Things don’t seem to be getting any better; I’m still cramping after every bit of food I eat and bathroom visits are painful and unpleasant… I think I’m going to have to call my helpline on Sunday and see if there is anything else they can do.

Happy belated New Year, everyone!

I hope everyone’s had a good New Year so far. I’m unfortunately still flaring and I don’t know if the increased mercaptapurine and additional colesevelam are actually working anymore. It’s quite painful after eating and my dinner didn’t stay down last night so I’m feeling a bit unsure. I’ll probably give it another week and then call the helpline if things don’t improve. I also need to book my next infusion; for some reason I wasn’t given an appointment for my next one. I’m starting to feel as though I need them more often.