Adjusting to my new life

Several months in, with no real diagnosis but ongoing symptoms, I am back at work and about to go on a long haul trip which was booked before I got sick.

I was heading to Anna Maria, a beautiful island in Florida with my husband, the kids and my mum. After weeks of worrying about how I would cope with the airport (standing for any length of time caused extreme dizziness and started to bring on my symptoms) I eventually booked wheelchair assistance. It was my first concession that this illness really wasn’t going away and my first experience of how difficult it is being at once invisible (apparently walking in front of a wheelchair so you need to suddenly stop is a THING) whilst feeling simultaneously judged. I’ve seen enough comments on the Daily Fail to know that if you don’t look ill or disabled, people will wonder, often loudly, why on earth you need a wheelchair. My strategy for dealing with the first issue was to stare at their backs in a passive aggressive manner. This did not improve the situation but did give me some small satisfaction. For the second it was to Not Give A Fuck and just focus on getting through security to the plane, via the bar (I was still pretending alcohol didn’t make me feel like crap). On the plus side we got pushed right to the front of the two hour immigration queue in Orlando which almost left my husband feeling that the 4 month illness had been worth it.

The holiday was wonderful and for the most part my symptoms abated enough for me to enjoy time with everyone, hang out and play with the kids and generally start to think maybe this was finally coming to an end.

My happy place ❤

When we returned I carried on feeling..OK. Not amazing, not completely recovered but way better than I had been. I informed work I thought I could start doing more hours and taking more on and really felt things were starting to change. But, as I have now found out is pretty common, it was all false hope.

Or maybe it wasn’t and I really was recovering but I got too overexcited and it triggered a crash. I started really struggling again and couldn’t up my hours the way I had planned. I went back to the battle – the fatigue, the brain fog – desperately trying to function and probably not fooling anyone but I couldn’t face giving up and going back on sick leave so just kept pushing.

Each week became a battle to try and survive my time in the office, trying not to show how bad I was feeling, and a battle to try to spend quality time with my husband and kids and not spend my entire time flaked out on the couch. I use the word battle because that’s really how it felt (and still does alot of the time). A fight, which is exhausting in itself. Fighting to keep positive, to not give in to the increasingly frequent thoughts of ‘what if this is it and I don’t get any better’, fighting to keep my job, to be a good parent and wife. Fighting to have some semblance of a life beyond work and the sofa. Fighting to find an answer, some real scientific reason I feel like this. I mean honestly all this fighting is enough to make anyone bloody fatigued.

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