What Post-Impairment Syndrome Has Meant For Me

Ram

Ruth has CP and Perthes' Disease and has recently stopped teaching English after 25 years. She lives with her husband and Archie the cat.

I can tell you a lot about my CP post-impairment syndrome, but the one question that I can’t answer is when it began. What I can say is that, at some point in my early forties, my world began to shrink, my choices became fewer.

It took a while for me to notice that it had become usual for me to turn down invitations from friends and although I still claimed to love a long soak in the bath, I had been using only the shower for months. I found myself cooking meals that I was too exhausted to eat or taking the rest of the weekend to recover from a spot of vacuuming. I would get impatient and panicked if there turned out to be more walking than I expected or there wasn’t a seat in sight. Shortly after that I started to fall. It felt like a return to my early school years when, for me, grazed knees were a permanent feature, except now I had a replacement hip to protect and I didn’t bounce back quite so easily.

Up until then I had generally operated on the basis of ‘Use it or Lose it’, an attitude very much encouraged by consultants and physios. I frequently pushed myself to the point of physical exhaustion and viewed my CP as the non-progressive condition that it technically is. I had never heard of post-impairment syndrome and didn’t know that it was soon going to dominate my life.

My childhood was all about getting me walking as ‘normally’ as possible. My gait was scrutinised, with splints and surgery being featured heavily. I felt as if I was being ‘fixed’ and, until I hit double figures, I think I was under the illusion that the mending would eventually make me pretty much like my non-disabled friends and that it would last for the rest of my life.

Over the past six years, post-impairment syndrome, and the fatigue, pain and reduced function it has brought, has necessitated that I redesign most aspects of my existence. First came crutches, then my wheelchair, two spinal surgeries, and applications for a bus pass, Blue Badge and PIP. Now, as I write, I am preparing to move house from Gloucestershire to Durham, at least in part because my teaching job has become the latest casualty. My next home will be a bungalow; I tell myself that this is more by accident, than design, but I suspect I’m future-proofing. I sometimes joke that at 49, my life has much in common with that of my 80-something parents but, behind the humour, is the question of what a few more decades of deterioration might look like.

There are many things about it all for which I am grateful. I know that, had I been born a decade earlier I would have been very unlikely to survive. It perhaps isn’t that surprising that the medical profession is only just discovering what can happen to CP bodies like mine because, only now, do we have the chance to age.

On a more practical note, I have options because I was able to work full-time for 25 years; I can choose my own housing, have a husband with a career and I am in a position to be able to fight for the treatment that I need. Having said all that, it has been a lonely journey. Help has often been hard to find; I have sometimes been treated as if I was giving in to my CP and have had to learn to become a wheelchair-user via YouTube, Twitter and trial and (a lot of) error.

There have been days when it has been easy to laugh and to enjoy myself, but plenty when I have found myself feeling scared and defeated. A dedicated and multi-disciplinary CP service would have made a huge difference and, most-importantly, would have helped me not to feel like my loss of mobility is somehow my fault. I recently saw a new consultant who told me that he thought that I was doing well ‘under the circumstances’, the kind of simple, yet vital, reassurance which isn’t always forthcoming.

I hope that the path for people with CP, younger than me, will be an easier one. I hope that they will meet professionals who are able to look further into their futures and to help them to plan for them. It may be that CP will always take its toll on our bodies but, with the right support, and information, we can have the lives we choose.

Have you experienced any symptoms of post-impairment? Has your disability changed as you have got older? Let us know in the comments below!

Chloe_Scope

Thank you for such an insightful post @Ram!

If people would like to know more about post-impairment syndrome, our Cerebral Palsy Specialist @Richard_Scope has written a post about this.

https://community.scope.org.uk/discussion/56078/post-impairment-syndrome-and-cerebral-palsy

April2018mom

Thank you for telling your story @Ram! 

chiarieds

Hi @Ram, thank you so much for your post; I'd never heard of Post-Impairment Syndrome, & I'm also grateful for @Richard_Scope for explaining this further.

Ram, your post resonates with me in a couple of ways; firstly I used to work with children with CP hoping to help them 'then', & unfortunately not understanding their future too well. Secondly, when you write about your age, but your life has much more in common with your 80+ year old parents..... I have the hypermobile type of Ehlers-Danlos Syndrome, which impacted greatly on my life from about the age of 40. I was told a few years later, that I was more like an 80 year old inside; studies on 'ageing' in the USA were also looking at people with my disorder!

Ehlers-Danlos Syndrome is one of a group of inherited connective tissue disorders; we have defective collagen, something that is found in every part of the body. Connective tissue is the 'glue' that holds a person together, as it's name suggests....with the hypermobile type it affects your ligaments that hold your joints in place, your muscles, etc. The end result, as we age, is that osteoarthrosis occurs due to use of joints unsupported by ligaments that have allowed excessive movement.

I also hope that the future of those with CP, like those with Ehlers-Danlos Syndrome, & many other disorders, will be an easier one...it's hard, & sometimes the patient is the one 'educating' their health care professionals. This is something I have tried to do, researching medical papers to show that a neurological problem can co-exist with Ehlers-Danlos Syndrome (with the help of a wonderful New York neurosurgeon). It should not be so, but often the patient is the best advocate to describe what they're going through to GPs & consultants.

Adrian_Scope

A really fascinating post @Ram. Thank you for sharing with us!

linlin01

Thanks @Ram it was very interesting to hear your story, thanks for sharing and good luck with the house move.

tiggy19

I'd not heard of post-impairment syndrome but my sister has post-polio syndrome, also only recently discovered, and so this really resonated.
I am also dealing with the issues of aging with already damaged joints myself but my own doctors don't associate this with the fact that I took prescribed drugs in my 30s and 40s that can cause osteoporosis and then lead to osteoarthritis so just think fat (also drug related) = lazy, etc. Not much support there, but friends are great.
It is a huge mental challenge to accept the limitations - for me the fact that I can't just decide to go travelling and leave the house a couple of hours later to 'jump' on a train. I retired early, and am certainly not having the retirement I wanted, but find other ways to enjoy life most days.
The internet makes such a difference, as years ago I'd have had only books and the tv to keep me company when I am in too pain to go out or have to cancel another event. At least I can keep in touch!

loobyloo

I can recognise all the symptoms mentions but had no idea it was known about . I thought it was exhaustion that is associated with rheumatoid arthtitis . The last 10yrs have been a struggle . I mention this to consultant but they dontvseem to take it on board ,is it because I'm 76 yrs old and they think Its my age 

YorkshireLass01

I have never heard of it and to be honest, I don't want to admit that I have it, it's just another title to add to a long list of mobility restrictive conditions that I have and I hate this trend for everything having to have a title.

I was diagnosed with osteoarthritis age 27 (although now I know more about it, I know that it can't be that and is more likely to be rheumatoid or another autoimmune problem), quickly followed by having an advanced case of degenerative disc disease, then spondylitis, and finally the new in thing fibromyalgia. I went from a physically active young woman, who went to the gym, walked everywhere at speed, took my two girls all over the place (I am a single parent) and enjoyed a busy social life to someone who had to think twice before accepting an invitation and (thanks to the new PIP rules) became housebound. All of this happened over the space of 30 years.

Now, I am almost 60, have to have a Nana nap most afternoons, dread being asked out, hate going shopping and love my TV! My daughter has her own health problems (very similar to mine, but, as yet undiagnosed) and does all of the cooking, I just can't grip knives or lift heavy pans now and I hate that because I used to love cooking for my family and friends. Luckily, my daughter has inherited that gene! I used to love decorating, but now what once took me a day or two, takes me a month or two and there isn't the same kind of satisfaction; now I watch my daughters do it for me and that kills me! Friends have stopped asking us to go places because they know that I won't enjoy myself or I will cancel at the last minute.

The list is endless and I'm not a "giver upper", I will struggle and struggle before asking for help, life is too short to just give in to what your body is telling you that you really shouldn't be doing something. The pain and exhaustion after a half day out to do necessary shopping (groceries!) is awful, but I flatly refuse to give in and get someone to do it for me, it's my only time out of home is my weekly shop!

Chloe_Scope

Hi @YorkshireLass01, and thank you for taking the time to share this with us all. I imagine it is very difficult to look back at the things you could do. Not doing these things doesn't make you any less of who you were. I appreciate it is not easy though. I'm glad you have your daughters around to help.