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Capacity for Living

the_in_vis_able_methe_in_vis_able_me Member Posts: 5 Listener
edited January 2015 in Disabled people
This is my first attempt at reaching out so please excuse the fact it is long and clumsy. I don't know if my situation is unusual but I would guess it is. I have had a disability for my whole life but am only just starting to realize it in any real way and spent much of my life without being told why I was different. I am interested in how I can get the help required to increase my capacity for living and hopefully help others in the process.

A snapshot view of my health:
- Cerebral Palsy with secondary hemiparesis of the left-side of body
- Asthma worsening in last year, including high does of steroids and hospitilization
- Allergies
- Fibromyalgia spectrum
- Digestive troubles including IBS and sensitivities
- Recurring joint troubles and repetitive strains in knees, ankles, hands, lower back
- Occasional migraines with vision disturbance
- Endometriosis and recurring PCOS
- History of depression and anxiety

At 36 yrs old I am just coming to terms with the idea that I am disabled. (I’ve always hated that word because it suggests ‘unable’ rather than specifying what we have troubles with and finding ways to increase our living standards.) At 24 I was told verbally by a doctor I had cerebral palsy (from infancy), no further explanation was offered. Up until then I had not known why I had certain problems except being told I had weak ankles, digestive troubles at birth and a double jointed left hand. I had some difficulties with learning in the ways I was taught at school but with help from my mum went from the ‘slow tables’ in primary school to the top groups in secondary school and then later did a degree in theatre and an MA in an area of conflict resolution and human development.

I have rock-climbed in the past but could never ride a bike, though it did not prevent me trying, painfully, for years. I also danced for many years, though that was not without its difficulties ! I tried for years as a child to play the recorder, which was agony as my left hand would turn curl into a claw. I was predictably bullied at school. In the passively and actively discriminatory work world, so bent on survival of the ‘fittest’, I have fallen into the cliché of being in low paid, short-term and officially (but not in practice) part-time work. I did live in unsafe, damp housing for years because of my financial and health conditions. I have never received financial or practical help geared to my needs, nor support, other than a couple of weeks of neuro-rehabilitation when I was 28 yrs old. At present I am a parliamentary and local candidate for the Green Party. (One of a million reasons for this is as a stand against the cuts, ATOS and the move to the far-right. Political rant over).

My health in the last two years has deteriorated. This was fueled by two bereavements, two house moves as well as helping with funeral arrangements and with packing up my grandmother’s home. I was also dealing with a stressful job working with women at risk, without support or promised resources and then funding cuts ending said job, together with other ill health in mine and my husband’s family. Over this period I got pneumonia last winter , undiagnosed for a long while, then last spring and summer a worsening asthma crisis. I was on incredibly high doses of steroids for 2 months and in hospital for emergency care. I was dealing with aches and pains, pins and needles, disorientation, speech and memory loss, confusion, migranes and vision disturbance linking to special awareness troubles, digestion problems and worsening endometriosis in a steroid hangover. This was not picked up on by doctors, who did routine blood tests and suggested no further action until I insisted on being referred to a neurologist. It turns out that steroids made my symptoms worse, which makes sense as I have always found coordination etc harder when otherwise tired, ill, hungry, stressed or overwhelmed.

So, at nearly 36 I had my third neurologist appointment and had confirmed in writing CP with secondary mild hemiparesis of left side of my body and very mild pyramidal signs. I was warned to pace myself and that I am on the fibromyalgia spectrum. The neorologist was a very nice man who actually said I was forcing myself to live a normal life but I had to remember I am not normal. Part of me wants a T-Shirt with that printed on it. I heard those words with a mix of horror, humour and pride! Like the neurologist I saw when I was in my 2Os had said, I was told how exceptionally well I am doing, but no one has ever told me what their expectations for me are. I have suffered in the past from periods of depression and anxiety and don't want to go back there. At present, while fighting off the lurgy that is flying around, I am again on high levels of steroids and feeling the effects in the jitters emphasising what are normally near invisible spasms, particularly in my left hand.

Apart from a couple of of weeks physio when I was 28 I have never had any help or been told what to expect or what I should be able to do. Specialists, (when I have seen them,) emphasize how well I am doing but I need people who understand. I want support to get what financial, practical and emotional support I can to live as full a life as I can. When I was first told at age 24 “that will be the cerebral palsy”, it was obviously in my notes though no one told me and everyone assumed I knew or had not read my notes themselves. The knowledge I had then was what I found in 80s text books in the local library, written for carers of children. Added to that, ironically yet wonderfully, was the fact I had been volunteering with people with severe CP. The downside of this is that, without proper information and support, the knowledge did not properly register for me. The people I had worked with were really suffering so what did I have to complain about? I have never known how many things CP can affect, even when it is invisible to the outside world. If your disability is visible it seems you are judged on it as if no one expects much of you. If your disability is invisible people don’t take it seriously, to the point when you may not do either. They expect the same from you as anyone fully able bodied. Either way there is a sense of dismissal and of being undervalued. My symptoms have got worse, with wear and tear and exhaustion and I need all the help I can get. I am also beginning to understand that I deserve this help as much as anyone else who needs it does.

Please help me get started, any help offered gratefully received.

With Much Thanks,
From the invisABLE me

Replies

  • NoahNoah Member Posts: 430 Pioneering
    edited January 2015
    Thanks for sharing so much, it sounds like you have done incredibly well and achieved much and should be proud of yourself, despite the many challenges you have faced. It's not easy to make people understand, after all we are all very different individuals, yet many of us on this Forum do understand. Please feel free to ask any questions and we will do our best to point you in the right direction. The Scope helpline, are also very well placed to help you work out, what help may be available for you. It sounds like you have had a huge amount to deal with this last year or so, try not to compare yourself to others, rather focus on setting small manageable goals, that will help you achieve a better quality of life, and start enjoying the things you want. :-)
  • the_in_vis_able_methe_in_vis_able_me Member Posts: 5 Listener
    edited January 2015
    Thank-you, Noah,

    I have seen how you support others on this site too, and appreciate your kindness and optimism.

    I have the lurgy at present and what with asthma, steroids etc I am feeling a little more fragile and less focused or positive than I would usually like. It is a wake up call when stress and aging process start to take affect early in CP. When I was finally told verbally, 10 years ago, that is what I had, I heard "mild" and "non-progressive damage", which was pretty much all I was told. I did not expect worsening symptoms or really acknowledge the range of symptoms I had. Troubles with limbs can be most noticeable and it is easy to forget that muscle weakness and disrupted messages effect other things too.

    I'm not great at small, manageable goals. I tend to go for broke or not at all. For example I think this news makes me more determined to stand for parliament to be part of reclaiming the political conversation from the cut-tastic far right. Having said that, I am also reminded of the importance of rest and of acknowledging myself as part of a team. I am also learning to be honest with myself about my own needs and to ask for help, hence the life story ;)

    Thank-you for taking the time to read my 36 years of 'stuff'

    Take care of yourself and thank-you for your supportive and friendly words, it means a good deal to me.

  • NoahNoah Member Posts: 430 Pioneering
    Your very welcome.

    Lurgy, steroids and asthma is not very nice, hope things improve for you. Have you tried to identify some of your asthma triggers? I have found asthma UK website to be helpful.

    Remember, that lots of small steps or goals at our own individual pace, get us to where we want to be. Its often the small things/or adjustments that can make the biggest difference over time. You will get there, the help and support is out there, that will help your reach your potential.

    While rest, and listening to your body is very important, in fact vital, don't let having CP hold you back from doing the things you want, so many individuals that have CP go on to achieve amazing things, there are so many very inspirational stories online. Perhaps because of the extra effort we have to put in to do things, we take less for-granted, and often have to think outside the box to get to where we want.
  • the_in_vis_able_methe_in_vis_able_me Member Posts: 5 Listener
    edited January 2015
    Wise words, thanks again,

    I'm aware of my asthma triggers, but as you know some, like lurgy and stress, can be hard to avoid sometimes. I discovered Asthma UK earlier this year when my symptoms worsened. I am now on a better preventive inhaler for me, which helps. So does yoga breathing. In fact, when I've been able, some very basic yoga moves carefully done have also helped breath, balance and my sense of well-being.

    I don't intend to let CP stop me, but I have to find the help I need to get there. I know I can, and have, accomplished things in the past with tenacity and step by step as well as leaps. I was one of only two from my particular intake to graduate on my MA course when I did, for example. I don't want money worries to limit my life anymore than absolutely necessary. One reason I am going to seek when financial / practical help is available, for example with mobility / transport. I could not drive a 'normal' car or ride a 'normal' bike. I would love to have an adapted car and even more an adapted bike / trike for freedom and independence. I would also love to be able to play a musical instrument and would love to have a one handed whistle / flute or something.

    Telling people has also been a thing, particularly my mum, who (wrongly) held a lot of guilt. When I told my husband years ago, aged 24, the day I was verbally told, I used some humour to communicate things. Many of my friends know a little now but I never spoke much of it to many people because I did not know enough myself or realize the impacts it had on me. People who know do still make basic errors like expecting me to catch things with my left hand, which has amounted to having all sorts of things thrown at me. It is not in malice but it has been hard not to feel frustrated. I guess my outpouring now is an acknowledgement of my need to communicate things with others.

    I am aware there are many who have far worse troubles than I do. The fact that my disability is to many invisible is, in a lot of ways, arguably, a good thing for me as I have less severe symptoms than so many. 'Invisible' symptoms come with their own set of complications too. I think helping some to understand is going to be a very long journey of small, manageable goals.

    My first post on this forum was in response to another person. I fully agree with you that "Perhaps because of the extra effort we have to put in to do things, we take less for-granted, and often have to think outside the box to get to where we want." My analogy was rock-climbing 18 years ago (with my father who is now in a wheelchair and with limited sight). The views were break-taking partly because of the effort. I remember the colour and texture of the rock-face. Fully able bodied people may have less trouble doing things but it does not necessarily equate to appreciation of life. CP has fed a form of empathy and tenacity in me and in so many others, including, very obviously, yourself. I am very thankful for that.

  • NoahNoah Member Posts: 430 Pioneering
    It sounds like you are doing a lot of the right things, hopefully lurgy and some stress will pass soon and you will feel better.

    Communicating with friends about a disability is never that easy, but can sometimes take the tension away by talking about it, I'm privileged to have a very wide circle of friends. some with a disability some without. I like it, that most of my friends don't look at what I can't do or my disability rather they see me for who I am and are always there to help and support me achieve the most possible. A good sense of humor, ability to laugh at yourself and quite thick skin helps at navigating though life and the many, sometimes, embarrassing situations that present themselves. Yes, I can see how disability being more invisible is a good thing as well as can pose challenges. Guess its important to be upfront with your best friends as to when you need help, not always easy though, i often will put my brave face on, and try and push on regardless! Hope you find the adapted car, bike or trike that gives you more independence, there are so many amazing things out there. Just look at some of the bikes used in the paralympics. The other day I was out on my bike and a single leg amputee steamed past me. So mighty impressive and very inspirational and showing how anything is possible.
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