Having fluctuating illnesses can be really difficult to live with. I can’t get used to the limitations my illnesses present me with because they change regularly. I have constant pain but it’s at varying levels. It’s the same with other symptoms like nausea and fatigue. They are always there but some days I can deal with them much better than others. 

My legs cause me more trouble than anything else. I rarely have “good” days with my legs. At best, I have good moments where I can walk a few steps like a “normal” person and less like a penguin with a heavy limp. This doesn’t happen very often though so the penguin walk has become my “normal.” On days like today, I can’t even manage that. My right leg has decided it’s not participating today and collapses beneath me whenever I try and put any amount of weight on it. It sends a horrible, sharp shooting pain right through my bottom half. It’s exhausting trying to move, even with crutches. So I have no choice but to not move from the couch much. 

When a body part completely gives up, you realise how much you rely on it to just work. There’s no more ‘just having a shower.’ It’s an exhausting task that takes preparation, a lot of time, a lot of energy and also causes a lot of anxiety. The fear of my leg collapsing when I’m getting in the shower, while I’m washing or getting back out is frightening. It has happened to me plenty of times. There have been times when I’ve had one leg in the bath and one leg out because it hurts too much to move any more. It’s like doing the Hokey Cokey every time I wash. 

As well as washing, there’s also getting dressed, using the toilet and trying to make food to contend with. I’ve not managed to eat today because it’s too painful to stand. I feel like I’m losing my independence. I have to wait for Paul to come home to make some food for me. I’ve not managed to do anything I needed to do like go to the supermarket, put a load of washing in or vacuum downstairs. I physically can’t do it. 

I worry because I’m 28 years old. If I’m struggling now, how will I be in say 10 or 20 years time? I do have a wheelchair but it’s no good when I need to get up and down the stairs or in the shower. I can’t drive or get my wheelchair out of the car by myself when I’m feeling this bad. I feel stuck.

There, I’ve thrown myself a pity party. 


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