Sunday, 24 June 2012

A Trying Week

Having returned to work this week I have been meaning to write a new post about how it's been going. However my hands and elbows have suffered as a result of being back at my desk, and the fatigue is a new experience altogether.

It's alarming when something you took for granted suddenly takes such a toll on your body. I have never been more appreciative of our national health service and the compassion of my employer and colleagues.

On a very different note, I have now learnt that watching a very stressful international football game does not mix with RA pain!!! Having to cross imaginary fingers for luck!

Saturday, 16 June 2012

"Normal"

It occurred to me today how quickly I have overcome my initial anxiety about taking tablets!!

The attached picture shows my current daily RA medication (my insulin is delivered through my pump and I currently take no other meds for diabetes), and its become 'normal' almost without me realising.

It's always amused (and irritated me) when people, on finding out I have diabetes, respond with "Oh there's absolutely no way I could inject myself everyday"! Really?? So you would politely tell the doctor you prefer an untimely and extremely painful death instead? Now, when I say I take 10 plus tablets a day I have got a few similar reactions.

I think people who are lucky enough never to have to face the reality of a lifetime of medication, just to stay alive, don't realise that you do just get over it! Don't get me wrong I'm not saying its easy, I know I've had my struggles, but it is empowering to remind yourself that the strength you need is always inside you somewhere. I am becoming a real believer that you don't get given anything in life that you aren't strong enough to cope with. Fingers crossed anyway!

Friday, 8 June 2012

Smiles and Cankles

Overdue update following my last post.

I'm feeling much better having spent lots of time with my BF and family during the Jubilee Bank Holiday Weekend. Been making lots of effort to include him in what's going on in my head before it becomes a problem as well as actually trying to have some 'normal' fun together. It has made a difference and helped me get through each of the low points one at a time rather than letting them build up. I've still had a few little cries and rants but nothing like I felt before.

I got my NHS Rheumatology appointment through the post this week. I was lucky enough to have the first couple of appointments privately through work when this all first started, but now I'm going to have to wait till August to see the consultant again. Will try calling his secretary though and see if I can get in sooner, he told me and my GP that he would see my urgently once the referral came through, partly because my blood tests indicate my RA is aggressive and also so I wouldn't have had to wait to start on the Sulfasalazine. I have no idea whether a 3 month wait actually is urgent in NHS Rheumatology land, but I suspect not.

All seems to be going well on the Sulfasalazine. I'm up to full dose and I've had zero side effects so far which is great. I'm waiting for the first set of 2 weekly blood test results to come back but I have a sneaking suspicious that these have been lost! I had the blood taken last Tuesday so they definitely should have been back by now. The GP receptionist has said she's going to follow up the lab but I'm not holding out much hope. Not great when your being monitored for potential liver failure!!! The next one is due this Tuesday so they'll probably end up crossing over now anyway.

I haven't actually seen any improvement in the RA itself but I know it's early days. I'm still in widespread pain everyday and very easily exhausted. I'm absolutely feeling the reduction of the steroids too. I know in the long run its best for me to take as little a dose as possible of these (diabetes-wise) but I may have to ask about increasing them in the short term, particularly now I'm approaching going back to work later this month - cue strange mixture of excitement and dread!

I've allowed myself back on the strong pain killers, despite the fact they make me very airy fairy which isn't nice. I'm just being aware and only taking them when I really need too, using the slightly less potent ones in between. The physio also gave me some very attractive(!) wrist splints to wear when my wrists are very bad which has helped. Now I just need to finger, knee, ankle and toe splints and I'm all set .... !

So all in all, no improvement physically but definite steps forward emotionally and I'm grateful for that at least for now.

My feet and ankles, (or rather my joints now affectionately known as Cankles) may disagree with my new found positivity but they at least make for some "interesting" photos: