I firstly would like to apologise for my lack of writing but Christmas, New Year and flares got in the way. And, if I’m honest I’ve suffered a bit of writing block, I have attempted at least 4 posts but failed to finish and post them. I would read them back and think “no, that’s too boring” or “that’s too long” and even “that’s just poorly written”, maybe I’m too self critical.
My last post was December, it covered my Rheumatology appointment and my dose of Azathioprine being increased from 100mg to 150mg. My blood tests had been moved from 3 monthly to 2 weekly. The results have all been fine and my body seems to be accepting the higher dose and as of the end of January, the blood tests have moved to once a month. I haven’t noticed a difference, I haven’t had any side affects but I also don’t feel better. However, and I have covered this before, Azathioprine can affect teeth and in January I had another wisdom tooth pulled out and 2 fillings…so I say I haven’t had any side affects but I can’t be too sure that the dental work needed was a result of the increased dose.
Although I say I don’t feel better, the dose was increased at a rather busy period of time…Christmas and New Year. I do like Christmas, I really do but the run up to it is quite literally exhausting and painful. There’s the shopping, which resulted in carrying multiple heavy bags that pulled on my joints – thinking back, I had to take naps after every shopping trip, they all floored me. Then there’s the wrapping, which seized my back and fingers up, just sitting at a table on a wooden chair caused mayhem to my body. And, finally getting out and visiting people with their gifts…an enjoyable time but exhausting. I spent New Year with my boyfriend and his family which was lovely but unfortunately by New Years day, the whole month had officially caught up with me and I was at the point of pain and exhaustion that I just wanted to curl up and cry. I had started flaring on Boxing Day, so to make it to New Years Day before feeling like that was quite the triumph. Despite the flaring, I had a lovely festive period with my nearest and dearest.
I haven’t got any expectations for 2018, I’m just taking it as it comes, which I’ve realised is the best thing to do when you have a chronic illness. I haven’t set any New Years resolutions, I never stick to them but I have made some slight changes. My first change is writing the symptoms I’ve had that day in a diary, I’m hoping it helps me to see a pattern in symptoms – which I can then tell my Rheumatologist, which in turn might help future treatment plans. Other recent changes include taking the supplement Evening Primrose and increasing my dose of Vitamin D. It was last year that my GP had told me to take it, but whilst in Boots, I found a higher strength of it and to my research, during winter you need a higher dose. Although, I will more than likely keep myself on this higher dose all year round.
I have recently had some new symptoms. In recent months I have a dull pain almost daily in my shoulder, usually my right but it often spreads to the left. I recently had a bout of what I presume was vertigo, I was sat eating and all of a sudden my hearing went, the room was spinning and I felt so hot…it honestly ruined my meal and I bloody love chilli. I had to go and lay down and that’s when I noticed my hands were trembling and I started to feel nauseous. The next new symptom prompted some worry (95% of the worry stemmed from my mother) but it’s pain in my back that can sometimes spread to my abdomen. When I pointed the location of the pain my mum said “that’s the kidney area, that’s concerning me!” and she even mentioned going to A&E when it was making me walk hunched over…but I refused due to my blood tests for kidney function being fine, I also tested my urine and it came back fine. I still get the pain daily, and since nothing is flagging up in tests, I think it’s just another Lupus thing that I’m just getting accustomed to. I can see why she worried though, kidney complications are rife with Lupus patients.
This past Sunday was hard for me, I found a new dog walk for my boyfriend and I, it was a woodland walk but I didn’t research it enough and it turned out to be rather long and quite hilly in places. We turned back when my left hip started to hurt and on the way back my knees and elbows started to hurt. I began to feel as if I was going to faint, a sensation that frightened me, it felt like my legs wouldn’t carry me further and that I would just keel over at any given point…away from home. That night I sat and held back tears because I took my mind back to when I was healthy and thought “Once upon a time, I would have finished that walk“, we didn’t even make it to the half way point. I’m still paying for it now, my joints have sharp pain radiating through them, I ache all over and my head is pounding…not to mention the fatigue.
I shall leave this update here before it gets far too long and you lose interest. I will be putting my brain to use and thinking of new posts in the mean time.