Sunday, 5 April 2015

Words and Phrases used

In this post I am going to list some of the words and phrases that have been used to describe ankylosing spondylitis by health care professionals. All of which have been used to describe the condition to friends. These professionals have ranged from care assistants, to nurses and doctors.


"Must be in pain all of the time "
"Makes day to day life hard to get through "
"Hard for others to understand "
"Difficult to explain in a few words "

These are just a handful of the phrases and words used. There are many more that I could add to this list and they all follow in the same lines.

Wednesday, 29 October 2014

Why Are You Sitting In The Dark

One of the symptoms of ankylosing spondylitis is light sensitivity and it's a symptom that I do suffer from, some days it effects me more than others.

I do find that artificial lighting can cause me more problems with this, than a sunny day. So at times I either wear sunglasses inside, or if at home I will have the room that I'm in quite low lit as it causes less of a problem for me and this issue.

I have often been asked if I am alright, or get asked why I am sitting in the dark. It's not because I am depressed, or keeping in touch with my goth side, it's because I am having a day where having the room brightly lit is painful. If, on one of these days, someone enters the room and throws on the main light it causes me to act like a gremlin and flinch, closing, or covering my eyes. I have been known to do my ARP Warden impression telling people to turn the light out.

As I am writing this entry I am wearing a pair of my sunglasses, due to this symptom being rather problematic for me. I think that I have been one of the few people who have been quite glad that it's been overcast and gloomy and not a nice sunny autumn's day. Now it's night time and the lights are on in the house, I have had to put my shades on, they haven't been needed till now. I would rather be sitting in the dark than a brightly lit room, as it would be less painful.

So for now I have them on doing the 'rock star' look, not to try and look cool.

Friday, 12 September 2014

Back To Impaling Myself

In my last blog I spoke about how I had to take a break from taking Enbrel due to a spate of infections, which were far from pleasant. These have cleared up, thank goodness, and I am once again taking Enbrel to alleviate the symptoms of AS. Many of which did come back to the fore during my extended break from my weekly injections. These were less pleasant than the infections that had caused me to stop taking this immunotherapy. All in all my break lasted for over a month, as I also managed to give myself deep cuts in a couple of stupid accidents and I did not want to add to the infection risk, so put off going back to Enbrel till these had healed.

Restarting Enbrel has lead to me getting some of the initial side effects that I had when I first started taking it, the worst one for me is the blinding headaches. These hit later on in the day, or the day after I have taken my weekly dose and they are bad to endure, but not as bad as the symptoms of AS. These I know, from previous experience of them, will occur for the first few doses and each time they will last for a shorter period of time, before passing totally. I was not unprepared for this to happen, I knew that having this long a break from Enbrel would mean that it would be like me starting it for the first time, as it would have totally left my system.

I am looking forward to it building up in my system and suppressing the symptoms of AS, which will take a bit of time, but good things come to those who wait, they say. The only bit I'm still not a fan of is injecting myself, I don't think I'll ever get fully used to that. At least the injector pens make it a quick and easy process to do, click the button count to ten and job done. So I am back on the Enbrel waggon and may it quickly take me back to being symptom free, the only one it hasn't helped me with is light sensitivity. However my light sensitivity is caused by more than AS, so I guess that is to be expected and on the plus side it gives me a great excuse to collect sunglasses.

Friday, 1 August 2014

Infection, Infection, Infection

Well this hasn't been a good few weeks for me, I have ended up getting one infection after another. With being on an autoimmune suppressor this is only to be expected, from time to time. However when you go from one to another, it does become a little vexing to say the least.

It started with a cut on my chin, buried under my beard becoming infected. This would normally be a small thing just a little swelling and not the nightmare it turned into. In a relatively short space of time the affected area went from a small swelling to it ballooning and me looking like an over ambitious Hamster and needing to be on heavy duty antibiotics. So I had to stop taking my Enbrel until the infection had cleared up and the wound had fully healed.

Unfortunately before this had finished healing, I managed to cut cut my self quite badly, which also ended up infected, thankfully it didn't end up as extreme as the first. So again needing to wait for it to heal before restarting my Enbrel.

Now to add insult to injury I have got a very painful stye in my left eye, I haven't had one of these since I was a child. Yet again time added to my wait, oh the joys....

It has been close on a month since I have last took my last dose of Enbrel and the symptoms of AS are creeping back in. The stiffness in my joints when I wake, or sit in the same position for too long. The random aches and pains. Even the random bouts of fatigue, these are the worst, feeling so drained, lethargic, listless, devoid of all energy. I'll take all of the other symptoms of AS over this one, I find it the hardest to cope with.

I am looking forward to being back on Enbrel as it helps me so much and pushes the symptoms of AS into the background, which greatly improves my day to day life. Having all of this happen to me has not put me off of taking it, I accept that being on an autoimmune suppressor can lead to things like this happening, and I hope it's a long time before I have to take this long a break from it. As I had almost forgotten how much AS can hamper me, when left unchecked.

Tuesday, 22 April 2014

Waiting For Enbrel To Kick Back In

In one of my recent posts I talked about having to take a break from taking Enbrel, due to an evil cold. This has passed, thankfully and I am back on my regular weekly jabs. However taking this break has started to bring back a return of the symptoms. I was expecting this to happen.

Now I am back on Enbrel it'll take some time to build up in my system and start to reduce the pain in my joints, as well as the stiffness that has crept back. Thankfully these haven't reached the same levels as they were before I started on Enbrel.

I am sure that this will not be the last time I have to take a break from taking Enbrel. As it is an immunosupressant and everyone does pick up nasty bugs from time to time, so when I catch one I'll need the full force of my immune system to fight it off.

I am hoping that it'll be a long time before I catch another evil bug and have to take another break from Enbrel.