Update 2022

Apparently it's been 9 weeks since my last update and I thought it was about time I wrote a new one. There's been some changes but overall I'm much the same.

Improvements

My main improvement has been to my brain fog since I've started taking antihistamines twice a day. Apparently that points towards t-cells and inflammation being part of the cause but I haven't looked too much in to it yet. How it has improved is hard to describe as it's only a partial improvement and thinking is still far from normal. I guess if we use the fog analogy then there are moments when it lifts enough that I can see something a little bit away, sometimes I can see what it is or maybe just a bit of a shape but both are better than the fog obscuring everything. It doesn't usually last too long and I don't have any control over it but just appreciate the slight improvement when it occurs.

My other improvement is I'm no longer constantly cold. Now it's just some of the time. Other times I can struggle with overheating and some of the time I am just fine. Again no real consistency to things but I think the change is an improvement but it's kind of hard to tell.

Declines

My main decline is to my digestive system. I won't go in to details but it started with severe constipation towards the end of last year that I'm still taking daily medication to help out. The actual digestion of food has been getting more difficult as well and if I eat before the afternoon afterwards I feel something similar to car sickness, dizzy, my temp and heart rate fly up and I can't think straight. It's now got to the point where eating more than a single slice of toast before lunch makes me physically sick. It's also been creeping longer in to the day and I've only been able to eat toast for the last few days. I'm pretty sure this is down to a kind of acid reflux with some of my stomach acid coming up further than it should due to the bit that's meant to stop it getting weaker. I have a lot of things getting weaker (chewing and swallowing can be a real struggle at times) and that's just my theory that fits. I'll be having a check up with the GP soon so will discuss it with them then.

As mentioned things just seem to be generally weakening and it almost feels at times like my body is slowly falling apart. Muscle strength I expect to lose as I'm unable to work it/us it much but things like swallowing or keeping my stomach acid down isn't explained by that, there is something else going on causing weakness to things like that and my eyes.

Fatigue

Fatigue remains pretty consistent and whatever I do remains to have a cost. I say I can't get out for a walk and that's not strictly true, I can. But even starting to pick up Kacey from school with a 5 minute walk (if that) each way has been meaning I am getting more fatigued. That doesn't just mean I'm tired but all my symptoms worsen such as the brain fog, weakness and inflammation through my body so everything I then do becomes harder and I need to rest more (which I can't really do as I'm resting all the time I'm not doing anything).

Depression

We'll just say things are under control and leave it there.

Conclusion

Fatigue is still bad, depression ongoing and my body is struggling with weakness and inflammation through my body as well as continued neurological issues. Overall I'm physically, mentally and emotionally exhausted but there is some improvement. Hopefully I will slowly improve over time or a treatment will get development but I can't get too hopeful about that and just need to do my best to accept where I am at right now. I've come to the conclusion lately that in addition to being chronically ill I would now consider myself disabled. That isn't for any kind of dramatic reason, just a realisation of where I am at and how I need to be realistic with my expectations of what I can and can't do. I will continue to gently test my limits to try and improve where and when I can but will be careful not to break myself in the process.