“Do you work?”

 

It is a question I get asked frequently, usually by medical staff. I feel embarrassed when I have to answer, admitting to not working these days . It leaves you feeling that you are in some way a scrounger dependant on others for your means to survive.

 

The truth is I would love to work and I think its great that medical staff see past the wheelchair and my long list of medical complaints. Disabled people are more than capable of being part of the work force, however the issue is not that disabled people are lazy or unwilling to be “productive” members of society, there are usually a whole catalogue of reasons why they find themselves without gainful employment.

 

I was recently asked this question by an old school friend that I hadn’t seen for over 20 years. It is a natural question when you are chatting to someone when you first meet them or haven’t seen them for a long time. I hate this question because it automatically put me on the defensive. I feel like I have to justify the reasons why I can’t work and excuse my inability to be a normal human being. That wasn’t implied by the questioner but it is how the question made me feel.

 

I understand why medical staff ask the question, they want to know if there are environmental factors that could be at play contributing to your condition. They want to assess what it is that you are capable of doing. However when asked I feel like I am being asked to justify my very existence.

 

You see I would love to work, I worked from the age of 16 to 34.  I was very good at my job and my colleagues will still contact me to ask my advice about things even though I haven’t worked since 31st May 2008. I had never had a disciplinary, my capability to do my role had never been questioned, I never imagined that at any point during my life other than retirement that I wouldn’t work ( unless I had a winning lottery ticket ). I never thought that I would become so sick that I wouldn’t ever be able to go to work again. I never imagined that if I did become sick that my employers would be unwilling to make the reasonable adjustments required by law under the 2010 Equalities Act or when I was working the Disability Discrimination Act. I never in my wildest dreams believed that any of this could happen to me.

 

You may read my blog and think she sounds like an intelligent person, her blog posts must take her ages to write etc etc. I would agree that yes I am above average intelligence and my blog posts are time consuming and exhausting. Hence why I only publish twice a week, I would love to have the ability to write full time. However I am only viable for a few hours each morning, after that I struggle with any task that demands mental acuity or physical expenditure. My days follow the same pattern 365 days of the year.

 

I get up each morning riddled with pain despite still being inside my 12 hour slow release dose of morphine. Pain wakes me up every morning and is much more reliable than any alarm clock. Just because I don’t squeal, shout or cry on waking doesn’t mean I am not in pain, it just means I am used to it. I sleep on a memory foam mattress topper, yet I still wake every day feeling like I have slept on a concrete slab. If I wake up lying on my side the pain will be from my face down, whatever part of my body has been in contact with the bed will hurt. If I have been lying on my back the pain is from the back of my head down. The first thing I do every morning is take 5ml / 10mg of oramorph to dull ( notice I say dull because to actually get rid of the pain completely I would have to take such a large dose I wouldn’t be able to function) the pain until its time for my next lot of pain killers.

 

I make my way downstairs and put the kettle on for what will be the first of many cups of tea that day. I have polydipsia – excessive thirst which is part of my dysautonomia symptoms, this is day and night (at night I will go through 3 litres of fluids). This also means a lot of bathroom breaks because I do not hold on to what I drink regardless of the sodium and florinef tablets I take. I also have my first cigarette of the day ( I know thats a hanging offence and I know its not healthy). By the time I sit down for my first cigarette of the day my orthostatic intolerance kicks in and I will have the first of many pre-syncopal episodes of the day (in varying degrees of severity) some days I am lucky and my vision will just grey out and I will feel shitty, other times I am left working out very quickly which direction it would be best to faint in (for the least amount of physical damage). For the casual observer you wouldn’t notice this because if you were talking to me I would just carry on the conversation, not because I am some sort of hardcore hero but because I am so used to it now I try to prevent it being a big issue ( that works fine until I actually do black out / faint).

 

Once my cup of tea is made I then make my way to the sofa and this is where I will stay until it is physically safe for me to climb the stairs again to have a shower (helped by my husband). This will take several hours to achieve, again to the casual observer nothing appears to be wrong with me other than the fact I look like a lazy bitch. You see my illness gives you no outward signs, no clue as to what is going on inside. Its easy to make assumptions by just looking at me.

 

During my enforced sofa time, depending on how mentally with it I feel I will check my emails, facebook, twitter and if I am ok I will attempt to write one of the two blog posts I write every week. Some weeks I don’t manage to write two, thankfully I have used the good weeks to put together some what I call back pocket posts, ones I use in an emergency. However my emergency posts are not always fully formed and need some work done to them, in those situations I usually just post my apologies.

 

If I am not up to writing then I will watch TV, due to my enforced early bedtimes – anything from 4pm onwards I have to record a lot of programmes that I follow in the evenings. I haven’t seen evening TV for so long I couldn’t tell you what happens after the 6pm news on BBC1. I follow a lot of TV far much more than I will ever admit to. Somedays I can’t even do that because my memory is so poor I can’t remember what happened in the previous 15 minutes and the plotline is making no sense.

 

If I manage a shower and there are many days that I don’t, I need to have an hour or so of rest to get over the physical exertion. Things have changed dramatically from my pre sick days. I used to wash and blow dry my hair everyday, I wore make up – even on my days off. I never left the house without make up. I wore nice clothes and believed that sweat pants were for gym bunnies or obese people that were just kidding themselves. Its easy to be judgemental when you’re not in others positions. My favourite piece of clothing now is a pair of yoga pants and a sweat top or pajamas. I used to be well put together and took pride in my appearance. All of that takes far too much energy these days and the energy I do have I want to use for other things. I still make an effort for special occasions and doctor appointments ( sometimes doctor appointments are special occasions as it maybe the first time I have been out of the house in months). 

 

I have learnt that you need to be properly dressed and wearing a full face of makeup for doctors appointments otherwise you get accused of being depressed. The fact that the journey to see them is going to take you days to get over, even though it was only a 15 minute car ride is neither here nor there to them. Anyone who doesn’t take pride in their appearance must be suffering from depression after all thats what they learnt at med school. I also learnt not to wear a lot of black to these appointments, black is one of my favourite colours with very pale skin and blonde hair black is dramatic on me especially if I go for bright red lips. Unfortunately doctors aren’t that fashion forward and all black is another indicator that your sickness is all in the mind. Anyway I digress as usual!

 

As the day ticks on by the less and less energy I have. I struggle to keep myself upright even in a seated position. Due to Ehlers Danlos Syndrome affecting my spine as the day progresses my spine takes on the shape of a letter C and my neck starts to struggle to hold my head up, it lolls towards the top of my back. This is not comfortable but as I try to stay out of bed as much as I can I will lie on the sofa or sit propped up by cushions. I have difficulty thinking clearly and have difficulty finding the right words. I know the word I want yet it cant seem to make its way from my brain to my mouth. It hasn’t been just once that on my personal facebook page I have asked friends and family for the word I am looking for. To know that you are an intelligent person and to fail to be able to articulate is soul destroying. It is one of the symptoms I find hardest to deal with.

 

My sight deteriorates throughout the day as well with varying amounts of double vision or ptosis (which can affect one or both eyes). Using computer screens becomes more and more difficult. Dependent on what level my health is at on a particular day I may have to use my oxygen concentrator to supplement the amount of oxygen circulating in my system.

 

Bed can never come soon enough and it’s not uncommon for me to be so exhausted by the mornings activities that I need to sleep for an hour or so in the afternoon.

 

I realise now I haven’t even mentioned the other ways in which my dysautonomia can impact my day. I never have a day when my postural orthostatic tachycardia syndrome does not play a part. On a bad day every change in posture (which can mean as little as turning over in bed or moving my head) is accompanied by the feeling of my heart racing to the point it seems as if it will burst out of my chest. I become short of breath and can feel at times that I am having a heart attack such is the severity of the pain in my chest. Again to the casual observer it would only be on a very rare occasion that you may notice that there is wrong with me. I am the master of disguise and to admit to you that there is a problem means that you are in my inner circle, the only people I tell the truth to when you ask me how I am.

 

Next time when someone asks me “do you work” I am going to answer “Yes, I am a professional sick person. Such is the level of my expertise you will never realise the sheer shittiness of the hand I have been dealt!”