Baby Cuddles, Friends and Lemon Cupcakes.
Baby Cuddles, Friends and Lemon Cupcakes.
Christmas has always been my favourite time of year but, as it’s also a time of reflection, it comes with its difficulties too this year – one of which being that not much has changed this past year and so I increasingly feel stuck in a rut.
This time last year, I was struggling through work and spending most of my spare time sleeping in order to recover. The systemic symptoms started to show through more and more – fevers, rash, lack of appetite, chest pain, confusion and lethargy. I was admitted to hospital on the 16th December – 23rd December and then again at the end of January and we’ve been trying different medications to get me back on track ever since: Cellcept (Mycophenolate Motefil), Imuran (Azathioprine), back to Cyclosporin and Enbrel, then Methotrexate and Abatacept (Orencia) and now Tocilizumab (RoActemra) and Methotrexate.
Needless to say I haven’t been to work; in fact it has been difficult to do anything. One whole year of not really achieving anything, of watching everyone else carry on with their lives and just waiting to get something akin to normality back. On a day to day basis it doesn’t seem so bad – you have little choice when you wake up unable to move, or with no energy to get much done; instead, you just do what you can. But looking back on a whole year, well that makes things seem quite scary.
If I think about things too much, I start to panic. I have an idea of what I want in life but suddenly it seems like there is a vast space between myself and my goals or desires. This ‘space’ has been there before and fortunately, it shrank to an achievable scale for the years when I was relatively well – things seemed possible again – but the past year has opened it up again and I feel stuck in the huge rut.
I try and console myself that everyone goes through something similar; for all sorts of reasons, people’s lives don’t live up to their expectations or go astray. I guess there just seems to be no end to this in sight for now, but it will come.
Sorry for the lack of posts recently; I haven’t been feeling too good at all and so am unable to put my mind or hands to much blogging. Ironic that when you have the most need to write about things, you are are least able to do so.
I’ve been spending most days propped up on pillows on the bed, unable to manage the stairs until late afternoon / evening when my second lot of painkillers kick in. This knee and hip just don’t want to budge and the pain in my lower back seems to be getting worse as a result of moving awkwardly. The left elbow is also locking up again at an angle, making tasks such as chopping food difficult.
Tramadol takes the edge off it but I’m still struggling and have resorted to using a home TENS machine as well. This is good for muscular problems (like my back) but hasn’t really helped my joints. I had hoped to hear from my GP about changing my pain relief, but he has been away this past week. I have an appointment to see him on Tuesday though at least.
Until then, all I can do is as little as possible!
Wow, I really have overdone things.
I’m back to struggling in the morning today and had to leave dressing / showering until after 12.00, when my painkillers had taken the edge off the pain and stiffness. Knees, hips, elbow, shoulder and neck are all hurting and I’m starting to feel some lower back pain, possibly as a result of sitting and moving awkwardly or compensating for the wonky joints. The knee has obvious swelling and the elbow is looking deformed again, but I’m trying to hold out until 8th December to see my Rheumy.
The cold might be adding to the problem, although my temperature seems to be all over the place. I feel freezing one minute but as soon as I put the heating on or wear extra layers, I burn up and start to get all clammy. I’m absolutely shattered too, so I think I will just do as little as possible and hope it passes once I’ve recovered from the weekend.
It was about this time last month that I thought I saw some improvement after the Tocilizumab infusion, but no such luck this time. I still don’t understand how my results are looking better when I feel like this. Things are never straight forward with Still’s Disease!
I just waved my Cornish friend off on her journey home; she stayed with us for a couple of days and they flew by. I was sad to see her go, but at the same time I am absolutely exhausted and the first thing I’m going to do after writing this is have a nap!
Yesterday was a lovely day; we had a lazy morning drinking tea in our pyjamas and having a catchup on everything (reminiscent of our days at university) and when my painkillers had kicked in enough to allow me to walk comfortably (ish) we caught the bus to the village and had more tea and a cake for lunch, before wandering around the little shops and gallery. We were out for a couple of hours and it made a nice change to my usual daily routine, especially with it being a nice sunny day.
I had some time in the afternoon to recharge my batteries, while we watched a film and then she helped me to colour my hair (something I haven’t been able to manage on my own) and turned it into a makeover of sorts – much needed too! In the evening we went out for a meal and then just had time to listen to some of her tales about weird Al Yankovic and Brian Cox before calling it a night.
This morning was a struggle, but I managed to get myself up and hobble to the bus stop with her to say goodbye and wave her off. Yes, I feel exhausted but it was worth every second and every spoon.
I’m off now to try and recover some,
Despite a few wonky joints and pains, I’ve been feeling reasonably ‘well’ the past few days (and I use that word cautiously, since I am by no means swinging from the ceiling etc! – just that compared to some of the rotten days I’ve had, these didn’t feel too bad). So anyway, for once, I have been able to look forward to the weekend and to seeing a couple of friends.
Today, I went to watch my local football team ‘not win’ again, although for once they also didn’t lose – it was a draw. It might not sound the ideal pastime for a winter’s day, but I have invested in some thermal goodies and will be adding to my collection as the weeks go by and the days get colder! I was actually quite snug and warm; my only problem was needing some extra leg room because I can’t bend my knee very far, but I managed and it was worth it for the homemade pie and chips we tucked into afterwards.
I was home in time for X-Factor (and Craig’s shocking exit – fixed!) and then it was time for bed. My Cornish friend is travelling from Cumbria to stay with us tomorrow and could arrive quite early, so I need to get as much sleep as possible beforehand. I haven’t seen her since our friend’s wedding and so we’ll have lots to catch up on. Should take my mind off the aches and pains for a while too 🙂
It was nice to see a few of articles addressing Still’s Disease these past two days; I’ll post links to them here but, as always, they can be found in the Articles section too.
The first article addresses the news that the safety and efficacy of Tocilizumab has been found to be sustained at the two year mark, meaning that improvements seen in the initial trials were still felt by the patient after two years.
The second article is the story of a young Australian girl with Still’s Disease, who has found some relief with Tocilizumab. The drug was only approved for use in children this month in Australia; they can now access the drug on compassionate grounds, but adults are still waiting for the drug to qualify for subsidy and can only access it privately.
Lastly, is an article about a young woman with Still’s Disease, who has also been given a new lease of life thanks to Tocilizumab.
Certainly seems to be the drug of choice right now.