Silent Night

 A good night’s sleep is vital for anyone to feel human. Since a really low point last year my sleep is often disrupted. This can be for many reasons... pain is a major one (I can wake up in the middle of the night feeling in agony for no reason) and having things on my mind is another. Its often the case that if you are feeling a bit stressed you always seem to worry about things at bed time, when there is nothing you can do about. I am one of those people who do this. I overthink things and toss and turn all night until I’ve solved the problem in my head.

 Sleep is a luxury I am extremely fond of, whether it be night or day. I have got into the pattern of waking around 6am every day when my body can’t stay still anymore. It’s really frustrating because at that time you can’t really do anything apart from drink tea and watch the news. But by 10am I am shattered again and want to go back to sleep! What is that about?! My body clock is all off and I need to get it in check. I spend most of the day feeling exhausted but I get through it and then as I curl up in bed it’s like a light bulb goes off in my head and I’m wide awake. How bloody annoying. The thing is on those nights I find it quite calming and peaceful to sit and write, scour the internet or read. It’s strange that late at night I don’t feel alone in my sleepless frustration. I feel comforted that my family are all tucked up in bed and as the painkillers kick in and sleep drifts into my mind I am incredibly relaxed.

It’s a shame I don’t feel so comforted in the day time when I am exhausted. Then I feel alone and awkward, not really knowing what to do with myself and I am often without company as my family and friends are out working. I look forward to the calm, silent nights where my thoughts seem to make sense and I am allowed to drift in and out of sleep (which seems like a crime during the day).

Maybe I am becoming nocturnal or something, God forbid. I don’t want to get into the habit of sleep during the day because it will be incredibly hard to break this habit when returning to work. Or maybe I could do nightshifts!

Good news I have received today is that my anaemia has subsided and I can dismiss two tablets from my daily collection. However, disease activity is still high and my Methotrexate injection dosage is going to be increased. My hamster face will also be sticking around as I have to stay on the steroids for a few more months and gradually reduce them (hopefully my swollen face and chunk of a body will reduce too ;)

Sweet Dreams

Life's Little Challenges

 I find it difficult to set goals at the moment. Even though long term ones remain the same, get my condition under control, go back to work, be able to live independently etc, I am much more accustomed to setting realistic short term goals. I know none of the above are going to happen overnight, and if I keep thinking they are achievable in the short term then I will only let myself down.

 Everything takes time. I should know this as its took me a long enough time to get to the positive stage I am at now but I still have a long way to go in overcoming my disease. So, I have been thinking about realistic short term goals. This involves setting myself little challenges that can be achieved and anything on top of this comes as a bonus. These are things like talking a walk to the shops, which then gradually increases to a walk around a shopping centre and then a trip to the Christmas market, for example. Yesterday I accomplished something I mentioned I feared a few weeks ago, a successful trip around the Christmas markets in the beautiful city of Bath! Now it wasn’t a marathon walk through the crowds, just a casual stroll around at a slow pace which I found difficult at times. However, preparation was the key. I had a swollen knee before we left the house so I strapped it up, took some painkillers and dressed appropriately (for a change) to brave the freezing cold weather.

The knee strapping definitely helped, and the fact I was with very sympathetic people who ensured I was ok when walking was encouraging. I think I was also concerned about becoming tired. I haven’t spent a day recently where I haven’t had to sleep for a couple of hours in the afternoon. But it seemed the exercise and some fresh (cold) air did me the world of good. I did get tired, but a coffee break and deep breaths pulled me through. And funnily enough I had a great night sleep as I was so exhausted after the long day. I haven’t had to sleep during the day today either, which is a great achievement for me.

One of my current short term goals is to get a little exercise daily, working up to when I can return to swimming (which I haven’t been able to do for a long time) and when I can do at least five minutes on my exercise bike without my knees wanting to explode. For some this may seem pathetic, but those of you who do suffer with RA should know how precious these little challenges are to me. Gone are the days where I could do and plan things effortlessly. Everything has to be well considered.

So that’s one of my goals for this week. Another is to not take two hour naps every day, so keeping myself busy and alert is essential. I have a truck load of coffee being delivered tomorrow...

Thank You Letter

 Firstly, my apologies for not getting back to the many people who have sent emails and left comments on here. I am not being ignorant if I haven’t replied to you, I’m just not feeling the best at present. I am in migraine city, which I think is due to the Rituximab and in a constant state of dizziness and nausea (whoop party time!). But I wanted to use this post to say a huge thank you to those who have got in touch. I honestly love hearing your stories and I am very grateful you are following the blog. Your stories have touched my heart and even though it’s awful to hear you are going through pain and suffering like me, it emphasises the fact we are not alone.

 I have truly enjoyed telling my story and encouraging others to be open about their conditions, if anything I hope you feel a sense of release and relief. I never intended to become a spokesperson for arthritis; I simply wanted to see if there was anyone else out there like me who I could share my story with. But you have all made it possible for me to be confident about my condition and encouraged me to do more to help others.

 I finished my second Rituximab infusion on Friday, which went a lot quicker than the first but was still a full day on the ward. I am glad it is over with now, and have the scars to prove it with a giant blue and purple bruise on my hand from the canular. It will be a while before I feel any improvement I guess, like all things with RA it’s a waiting game. But as long as my suffering is slightly improved by Christmas I will be a happy girl. I don’t want to have to creep off to my room to rest on Christmas Day this year. Last year I was so uncomfortable I couldn’t bear to sit at the dinner table for long so you can imagine how miserable I was.

 So I write to you with great appreciation for your correspondence from my bed, whilst I try and recover from having litres of drugs pumped into me. I hope that you continue to stay in touch and give me updates on your stories. Once again, a million thank you’s.