A Day in the life of….. a young disabled PCS member

The 2nd of guest blogs from the equality networks,  young disabled member gives us their view.

2am

In my sleep I have rolled onto my back and so my back has seized up as I can only sleep on my side. The pain wakes me up. My whole body becomes dead weight due to the pain so I have to use my arms to grip my bed post to pull myself onto my side to alleviate the pain. I eventually fall back asleep.

 4am

My hip starts to ache in pain from lying on my side for so long. Sometimes it does this, sometimes it doesn’t. The pain again wakes me up. I have to use my arms to pull myself onto my other side. Eventually I again fall back asleep.

 6am

My alarm has gone off. I am shattered from waking up every time I’m in pain. It’s like I haven’t slept at all. I press the snooze button as I’m just to exhausted to get up just yet.

 (Several snooze buttons later)

 6.45am

Been struggling to get up. As well as battling with the exhaustion and tiredness, I also have to deal with the pain and stiffness due to being still during the night. (The pain is always worse after periods of not moving). The pain is mainly in my joints, spine, neck and hips. The pain also shoots down my spine, down through my legs, which makes my legs buckle. Getting ready in the mornings is always a struggle.

 7.15am

Finally ready to leave. This is a good day. Sometimes it takes longer to be ready to leave on bad days where I can barely move.  There is never time for breakfast. Now a 40 minute drive to work. The downside is it means that its 40mins in the same position, which means I stiffen up, and there is no where to go to change position. I drive an automatic car as using a clutch in a manual car is too difficult.

 7.55am

Stiff and aching from 40mins of not moving, I slowly make my way into the building. I have a disabled space to park, but its still a walk either way. At the lifts and it’s taking ages. I can’t use the stairs as I can’t walk up more than about 2 flights before it aggravates my condition.

 8am

I sign in at my desk, load my systems and go into available to take calls. Then, I take a piece of paper and plan out my day. I’m allowed DSE breaks once every 45minutes or more if it’s a bad day. So write down the time I plan to take all my DSE breaks, regular breaks, lunch, board meetings, investment time, etc….

8.45am

First DSE break. Check it off my list. I walk to a secluded area to walk off the stiffness and to do specific stretches designed to help. 5 minutes is never enough and so it always takes me longer. Then walk back to my desk.

 9.35am

Repeat as above

 10.30am

15 minute compulsory break. I’m so tired from what seems like an already long day. I’m in pain and would love nothing more than to go home, where I can do what I need to do to cope. While walking through the corridor to get to the rest area, I sometimes end up limping due to the pain. I just ignore the looks I get.

 11.30am

Board meeting, Tuesday to Friday. A welcome relief in that I get to get up and move to relief the stiffness and pain, I do participate as much as I can during the meeting, but it’s a struggle as I’m already so drained from the day so far.

 12.30pm

Lunchtime – 30 minutes away from my desk – Heaven!! I walk off the stiffness. More stretches. A bit of spare time for the actual eating of my lunch. No time to really socialize when all of my time at breaks and lunch is taken up by managing my condition so I can get through the day.

 1.45pm

DSE break. Same as before. I sometimes feel a bit better by the afternoon after spending more time moving around, unlike the mornings when I’ve spent around 7hrs being still in bed.

 2.35pm

DSE break. Same as before. Just so tired now.

 3.15pm

Afternoon compulsory break. More walking and stretches. Just more focused on that it’s almost home time and I can go home and rest.

 4pm

Last DSE break of the day. Last chance for doing my specific stretches before the car ride home.

 4.30pm

Done for the day. To tired to do flexi. Just want to go home to rest. (Though, on days where I need to take my injection of medication, the thought of going home fills me with dread as the injection is so painful. But the end result is worth it due to it relieving the pain. If I wasn’t for my medication, I just don’t think I would be in work at all, as the pain was getting to be too much, prior to the injections).

 Summary

This is an example of a good day, though they do vary. A bad day is harder to explain as very few people will understand the intensity of the pain. The nearest description of the pain on a good day is to describe it as like having permanent sciatica.

 I am 26 years old, and have been dealing with my disability for nearly a decade. My condition is hereditary and linked to my immune system, my condition is degenerative and there is currently no cure, only medication to manage it.

 My medication keeps my condition at the level it is, trying to keep it from getting worse, (worse cases can include having the spine fuse together). But, the medication has to lower my immune system to alleviate the pain, which unfortunately means that I am more venerable to getting ill, and then it takes longer than usually to get well again.

 Being sick means that I can’t take my injection of medication as it would make the sickness worse, so I have to wait till I’m better again before I can take an injection. It’s a vicious cycle.

 Eventually I will get worse. I will get arthritis, which I’m not looking forward too at all. And I always have to be careful as if I fall or have a bad accident, it could do irrevocable damage, of which no amount of medication will ever be enough to alleviate the pain.

 The main thing I have to battle in work is the misconception that there is nothing wrong with me because I don’t look disabled. Partly, that is due to the fact that I’m a private person, so I put on a smile and don’t talk about my problems, and so people can walk past me and think I’m fine.

 It’s mainly that I don’t want people to know how depressed I may be with the constant pain that I’m in, knowing that it will never get better.

 Most people think that you are fine, and then they don’t understand or get jealous of the time you get off. But this time is filled with doctors and hospital appointments. Constant tests and x-rays, injections and bloods taken, physiotherapy and consultations.

 I struggle as much as I can into work, but on the really bad days, where my joints seize, and my back seizes up and locks and I can’t sit or lie down or even really walk; that’s when I don’t come in. when the pain is just too intense that it hurts so much that it makes you cry or want to give up. And then when you come in, only some of it can be counted as Disability Leave Adjustment. Which means some is sick, and so I can’t take sick for a regular sickness like a cold as I can’t risk increasing sick days and sick occurrences.

 I would gladly give anything to not be disabled, to not need DSE breaks, or Disability Leave Adjustment, but that’s the hand I got dealt, and so I have to deal with it, so I just get on with it and deal with each day as it comes.

This is just a slight insight into my life, which doesn’t even include the majority of what I go through, but I hope that it does give a bit of an insight into the struggle that a lot of disabled people struggle with, whether they are young or not. Everyone is different; different conditions, different day to day struggles, different prejudices to battle.

 This is my struggle…… This is my life 

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