How it Feels to Flare

My intention was to share a new blog post every week but last week, my body had other intentions. I had the worst flare I've had in a while, which made it a very long week. So I decided to put a pause on 'My advice to anyone coming to terms with their RA diagnosis' and instead write 'How it Feels to Flare'.

I'll steal my previous 'RA glossary definition' of flare  for some context. 

Flare: A period of disease where symptoms are more unmanageable/noticeable

I'll try and start at the beginning, as it's easier to organise the information in my head. When I was 17, my left-wrist started to ache in the mornings. It'd be a really intense pain, and it was noticeably swollen and the movement in my wrist would become restricted. This would usually pass by midday and then start again the next/night morning. For a good while, I brushed it off, I was quite clumsy so it wasn't uncommon for me to injure myself without realising. After a while I went to the doctors and got a diagnosis. That's when I started Methotrexate.

Thinking back, it's hard to describe what these kind of flares felt like as it been while. For a good three years, my RA mainly affected only my left wrist. It was painful. Your body attacking itself through the night, also meant, no matter how well you slept, you'd wake up shattered. This is called fatigue. I have a pretty high-pain tolerance (my clumsiness in my youth was a good preparation) and even if you don't, RA will definitely give you one. From what I can remember, although it was painful, it didn't really stop me doing anything, how much do you use your non-dominant hand anyway? Support splints, and deep heat were my best friends.

During my second year of Uni, my RA started to affect my right wrist. This brought about more issues. Although you wouldn't think it, studying Maths involves a lot of writing. Especially if you're doing pure maths. I tended to do a mix of Pure and Applied, and avoid Statistics like the plague. RA being in my right wrist meant things became more intense as it was my writing hand, which I used a lot more. Even then, I think I just got on with my day. I could think and work despite the pain with pretty little impact. I guess on days where I was more in pain, I'd be a little more emotional/sensitive. At this time, I was also working at John Lewis at weekends, doing private maths tuition, and being a Pass Leader, going to the gym and maintaining a social life. It is pretty mad looking back how well I maintained life despite a chronic illness. I guess the first 5 years, my disease was pretty well controlled, and flares were few and far between. I was in remission.

Let's fast forward a bit. Third year, second semester, in a pandemic. It's all a bit of a blur really. In the last year and a bit, at some point, my RA migrated. It moved from my wrists to my legs. From speaking to other RA sufferers and my Rheumatology team, I'm a bit of an RA freak. Most people's RA starts in one pair of symmetric joints, and then slowly spreads (hopefully at a very slow rate if they're on the right meds), not me. I've also realised that Methotrexate seems to work really well with my body, no noticeable side effects supressed immune system aside, whilst other people feel considerably rough the day after Meth Mondays... You have to have a gap between Methotrexate and Folic Acid (the drug that limits Meth's side affects). Most patients will do Meth Mondays, Folic Fridays as it's easy to remember.

Anyway, my arthritis completely migrated. I no longer flare in my wrists, I've just been left with a dodgy left one, due to cartilage erosion. The way it presents in my legs is completely different and in my opinion,  100*** times worse. Pain, I can deal with really well, it doesn't really bother or limit me. Discomfort on the other hand. When I have a bad flare, I wake up feeling like I've climbed Everest the previous day. No position will make me feel good. It feels like I need to spend the whole day stretching, except it doesn't tend to help. Unlike pain, discomfort is very distracting. It's also a lot more tiring. When I'm flaring, I can wake up from THE perfect night's sleep, shattered. My immune system will have started attacking my joints in the night, and I'll wake up completely fatigued with no energy.

There are 3 types of flares that I've experienced over the past 6 months.

Mild: Tends to last the whole day, an annoying discomfort but can kind of tolerate it, not as distracting.

Annoying: These are the flares were I wake up shattered and aching, stiff uncomfortable, but then by about 9 it's passed. These kind of flares are quite common among RA sufferers. It's really intense when you wake up and the fatigue can last through the day. Obviously, I'm grateful it doesn't last, but then again it can be quite frustrating. It almost feels like you imagined it/ are being melodramatic, but when you're in it, it's really intense.

Hell: You wake up feeling like you haven't slept in a week. You'll be stiff, achy and uncomfortable all day. Unfortunately, when I'm flaring like this, it's almost impossible to think/use my brain, process information. I generally avoid taking tablets as I have some residual issues (mentally hate taking them) from Hydroxochlorine. However I have tried pain killers with these, to no avail. I guess as it's not quite pain, it doesn't numb it. Deep heat also has little affect, the only thing that I've tried that works is CBD. I've never felt it necessary until now, but its affects are unreal, in numbing the feeling down. When I'm flaring like this, I realistically just need to sleep all day. These are the flares other people will notice. I am usually a people person, any mood. These days, I probably will avoid conversation and just want to be alone.

I've found the past 6 months really hard. I had a month where I was flaring every week, mainly a mixture between Mild and Hell. On the first week, you cope quite well, by the second week it's quite annoying, by the third I'm fed up. I don't enjoy resting, I like to be busy and it's frustrating when it's your only option at the time. At this point, you're was crying like clockwork, until you realise, that crying is making me even more fatigued, so I can't afford it.

I found it really hard when I had to take some time off work. It really made me question what the future would be like. I'm only 23. Taking time off for Arthritis? I felt guilty, although it wasn't my fault. Accenture have been amazing in supporting and reassuring me. Making sure I had everything that would make my life easier. Being flexible in working arrangements. I think it also helped that I am quite honest. I guess people can only help if they know something is wrong. If you looked at my work and the things I've done since joining Accenture in the past 6 months, you probably wouldn't realise that it's the worst my RA has ever been. I am quite proud of how I've dealt with it all. Not something I'd usually say. (If you ever hear me being cocky, I'm being sarcastic.)

It's dawned on me this week after some conversations with colleagues that it is Accenture causing my flares. Not my job, I am honestly so happy and in the perfect place for me!! But my routine at my job. I guess when I was at Uni, I was constantly walking between buildings and going for walks. The same in summer when I was on a tech internship, I was able to go for a walks when I fancied. Where as at the moment, working mainly remote in the one room, I guess I'm pretty stagnant. You don't really appreciate how everyday movement does so much for your body.

I've had a steroid injection this week should help but I've got a plan in motion.

I'm going to try and make sure I get more movement in my day, going for a walk every lunch. Maybe even walking calls when I can. I'm booked in with a personal trainer on Saturday who has some speciality into joints, and breathing pattern's effects on auto-immune diseases.

This time last year, I was happily working out 5 times a week with no issues. I want to get back to that. I've been avoiding doing intense exercise for a while as it seemed to make things worse, to be honest, even Yoga has become triggering. I guess if I'm going to be uncomfortable anyway, I might as well earn it.  Hopefully a change in my work routine alongside my steroid injection, will have me feeling in control of my body again. I'm excited. F**k RA Mona is back. (The Simone who doesn't let Rheumatoid Arthritis get in her way.)