Tuesday, July 12, 2011

On work and 'being well'

"You're relatively independent aren't you?" was a question put to me recently by an online friend. A question I didn't really know how to answer and one I'm not sure time to reflect has helped.

Sure, I live independently. Sort of anyway. It would be more accurate to say I live alone, require large amounts of support and have learnt to make the best of life without that support. But what does it really mean? Another friend's comments this weekend provided that answer. Roland, phoning to check I was safe and well after travelling alone in the BendyVan commented how glad he was, not just that I now have a car I can drive without immediately dislocating all my major joints, but that I'm well enough to be making the most of it at the moment.

Roland's right, I am relatively well at the moment. But this weekend highlighted just what level of independant functioning my relatively well means, and how challenging it is to translate that relative wellness into practical day to day life, let alone work.

When we start dating someone new, we all want to impress them, to show them our good points and hope that by the time our less good points start to emerge that that person likes us sufficiently to focus on the good rather than the bad. It's a bit like starting a new job, we're all keen to impress and prove our suitability for the role. For me, disability is a huge stumbling block to both those situations. Being sick, disabled and without diagnosis impacted hugely on all my personal relationships and ability to work. It would probably be fair to say that whilst employer's make it clear that it's a problem for them, when it comes to relationships it's a far bigger deal for me than it is for many of the partners I've had, but there it sits, firmly on my shoulder, whispering dark thoughts into my ear about how hard it makes life, how much it impacts on everything, and creates additional burdens simply not there when not yet sick or disabled people form relationships.

Can the person who cares about me cope when I dislocate, fall or stop breathing? Can they deal with seeing someone they love in agonising pain without any ability to help? Will they be prepared to support me financially if we ever wanted to live together or marry? Time limiting contribution based Employment Support Allowance will make that a pressing question for many couples, for those where the working partner is low waged it will prove impossible to form permanent, stable relationships with a sick or disabled person as the financial responsibility is to be passed to the partner from the state.

But really, it all comes down to can they cope with the day to day reality of chronic sickness and disability? In just over 24 hours this weekend I needed to ask for help to reduce dislocations in my thumbs, my shoulders, my hips and my pelvis. I needed to be helped off the floor many times, to be helped from sofa to door, to be brought food and drinks, to have morphine dispensed to me. I needed valium fetching after my pelvis was reduced and the consequent muscle spasms shook my entire lower half. I needed the comforting hand placed on my leg to reassure and console as I fought off tears. I needed help when I accidentally brushed my hand against my neck getting dry and my airway collapsed. I needed medication bringing urgently, and monitoring while I fought to gain control of my breathing. I needed someone there to make the decision about whether or not to phone an ambulance, to be able to explain to paramedics and the hospital what, if anything they could do. I needed help to shower, quite the comedy event with a small, slippery, wet bendy person liable to fall in dry, non slip conditions. I needed to be told when I'd clearly pushed myself too far and had to lie down.

That isn't a bad day, or me being unwell. That's me about as good as it gets. Issues which are challenging enough in a home based, personal environment where no-one has to worry about health and safety or the impact on anyone but the two people involved in that relationship. In a home environment, whilst it's difficult it can all become a natural part of that relationship, just another way in which partners support each other.

But, requiring that level of support in a workplace is not so easy. And remember...this is as good as it gets. Would you employ someone who is guaranteed to dislocate on a regular basis, fall over on a regular basis, vomit on a regular basis and highly likely to stop breathing on your premises......?

Really, would you? Because I wouldn't.

7 comments:

Visually Impaired said...

It is strange you said that a couple of other little things were said to me with that sorta phrase.

Visually impaired so sent to Beacon Centre for the blind. Ty were bitchcing about travel and that I needed to use a bus. I said I can't I have received the training but it still fails. I have got on buses at right stop and told them where I have wanted to go they have taken my money and well i've gone anywhere. Thy tried turning the screw don't you feel limited and trapped. NO I said I explained 10 or so routes to various places, Birmingham, wolverhampton, coventry and london on the train . I labored te points hey said you get around quite independently. I said It take ahell of a lot of planning to do it.

Another person says im quite independent. but alot of it is trickery or fake. Example I go to a coffee shop i order a tea, if i order a pastry something ,like a danish. All generic items. I go into a pub i order a coke or lemonade again generic, eating place, chips, jacket potatoe. Alot of people don't pick me as visually impaired as i do pretend to look. i know it stupid but it is my coping mechanism.

LceeL said...

Although Love Muffin's EDS is not as profound as yours, I can understand much of what you feel - only because I live with it every day.

My heart aches when I read what you say about what you experience. And I get so angry and upset when I see what the Tories are doing and have done to those on Benefits.

England was always seen as a country of Compassion, here in the States. It is so sad to see that the Compassion has died - all in the name of the Almighty Pound Sterling.

e said...

I can relate to many of the things you've expressed here. I now spend so much time tending to chronic this and disability-related that that I no longer have the ability to promise anything to an employer.

I take each day as it comes though I too fear what will become of our support and social programmes here in the US.

Anonymous said...

Is there no stopping this man?
David Cameron to sell off almost all public services

VIRTUALLY all public services would be privatised under “wrecking ball” plans to be unveiled today by David Cameron.

The Prime Minister is to announce that companies will get the chance to run everything from elderly care and bin collection to schools and hospitals.

Only the Armed Forces, the police and the courts system will escape Mr Cameron’s huge shake-up.

Anonymous said...

I am truely sorry you feel you have to justify anything however I did read this latest post on your blog with renewed interest.
I am lucky in that my husband and I were married for a few years before I had to start relying on him for things such as reminding me when I last took my meds. I really don't know how I would cope alone with my condition, but then I never had to.
When I was last single I didn't have this, and to be perfectly honest I am glad I had my husband to rely on when I was diagnosed.

Much as though I would have left me long before now I know I can lean on my husband for any and all help I need. Please don't feel that everyone is like you and I.
There are plenty people who will love us for us, medical conditions, falls, vomiting, and all manner of other wants and needs we have.

Never give up I know I wont and you shouldn't.

Ohh and one final word before I fall over with exhaustion thank you for your blog I have found it informative and interesting in the wee small hours of the night when I am awake and unable to sleep for pain and discomfort.

misspiggy said...

Like some partners, employers seem to find it easier when disability has crept up on them. Mine is great with me falling over, being late, not turning up, passing out, spending hours in the loo, appearing unkempt and unwashed, adopting weird postures and never delivering anything on time - mainly because they got to know me when I could still keep my issues hidden. I showed I was valuable to them and they have continued to see that rather than only seeing the disability. But if I left I wouldn't be able to start a job with anyone else.

I'm really sorry you have such a hard time. I don't know if it's any consolation, but your descriptions of what happens with your body have helped me recognise similar (but less severe) problems with mine. That helped me ask for better support before I ended up out of action and out of a job. Your work makes many people's lives better.

Melissa said...

I'm new to your blog, Veronica Foale sent me over. I don't have EDS. We're still trying to work out what the hell I have.

But so far, it has robbed me of a great deal of quality of life, and more recently, a huge chunk of my eyesight. I'll never drive again and I'll never read a book to my children again. But I need to put that in perspective. I was fortunate enough to be married before I ever got really sick, so I have support in a practical way. And while the government (I'm in Australia) is still 'assessing'whether I qualify for assistance or a pension, at least my Doctors are trying to help me with that.

I just want to say (without being trite, please don't take it as such, or pity etc) that I'm so sorry that this is the hand you've been dealt. That 'normal' weekend sounds terrifying to me.

I live with a lot of pain, but I've only dislocated one of my joints (a couple of times now) and my pain level is not near yours, I am sure. And I've never had to live in fear of not being able to breathe because of something like you described.

I'm sorry. It's noone's fault, and of course a sorry from all the way across the world is not terribly helpful (and perhaps unwelcome) but I can't help but feel that you're struggling with more than anyone should have to.

I admire your resilience and attitude. I greatly admire your determination to advocate for people with disabilities.