Aging and chronic illness

As most of you know, I turn 50 shortly and while that’s not exactly old it’s not exactly young either. In the decade since my 40th birthday my joints have starting subluxing, I’ve developed stiffness so severe at times I can’t even walk to the loo, my back pain is so bad it both scares me and stops me sleeping, and my previously unknown MCAD has reared its ugly head, to the point where at one stage I actually thought I would die from multiple anaphylactic events every day.  Make no mistake, getting older when you’re already chronically ill sucks.

I have the utmost respect for anyone who works for a charity having done it myself for many years, and know I owe a huge debt of gratitude to all the wonderful people working for EDS and M.E. organizations, however I do have a bit of a beef with them and it’s this: all their information is aimed at either kids or young adults (and by young I mean pre-menopausal).  Their magazines are full of young folks doing sports, fundraising by whatever means possible and generally being positive and not letting their disease beat them.  Which is great.  But speak to them again in 20 years time and they might be telling a very different tale.

Did you know there is not a single piece of research that’s been carried out on older people with either EDS or M.E.?  There is loads of info on possible complications in pregnancy yet not a thing on the Menopause, despite the fact that not all women will have babies yet all women will go through The Change!  I find this utterly shocking, particularly in the case of EDS where patient forums show that many women aren’t diagnosed until their forties because that’s when their symptoms seem to go nuts (as did mine).  Consequently there are no information leaflets from the charities on what to expect as we age, which is actually quite discriminatory.  I should really sue, if I could find a solicitor to take the case 😀

Due to an absolute lack of information on aging with my diseases I have no idea what to expect.  Even healthy women can struggle with joint pain, exhaustion, dizziness and stiffness at Menopause so when I have these symptoms I don’t know if they’re normal or part of my hEDS.  I don’t know if they’ll pass or if I should be concerned and ask to see a Rheumy.  I don’t know if I have a greater chance of wear and tear arthritis, though I assume I must have.  I have no clue if the extra exhaustion I feel is part of my waning hormones or whether age is negatively affecting my M.E.  Will my decades of inactivity adversely affect my heart and, if so, why is that not being monitored?  Am I more, or less, likely to have a stroke?  What’s the deal on osteoporosis?  Skin thins with age, so will mine be worse as a result of having hEDS?  Am I more likely to bruise as my veins, skin and capillaries weaken?  And 200 other questions I don’t know the answers to.

Health in general seems to be all about either children or pregnant women.  No-one seems to give much of a stuff about issues which affect the middle aged.  It’s almost like we don’t exist, and it’s not until we’re in our seventies and at risk of old age diseases like Alzheimers that the medical profession starts to give a stuff again (my Dad’s dementia care, for example, has been excellent yet I’ve never once had my memory problems evaluated let alone treated).

At the moment I feel like I’m dropping to bits, but is that a normal hormone-induced dropping to bits or is my hEDS actually deteriorating?  Should I be pushing for a referral or just putting up and shutting up?  There is an urgent need for studies on chronic illness in the older age bracket.  We need to know if there should be more regular monitoring of our conditions, whether treatments which are affective in younger adults are still as effective in older adults, and most importantly what the normal progression of our diseases should look like as we age because unless we know what’s normal we can’t know what’s abnormal.

Of course, the lack of information on hEDS and M.E. is nothing in comparison to the lack of information on MCAD, particularly in the UK.  Peri-menopause has caused my mast cells to go off the charts bonkers yet I haven’t seen a specialist since I was diagnosed 4 years ago.  I’m not being monitored in any way, am having to treat myself in the best way I know how, and am basically white knuckling it with no idea what my post-menopausal future will hold.  Which is scary considering MCAD may pre-dispose me to leukemia and other cancers and carries the daily risk of sudden death from anaphylaxis.  Or MCAD may not predispose me to cancer – noone knows, which is kind’ve my point! It seems that, in respect of the middle aged, no-one knows much of anything when it comes to my diseases and that, as a matter of urgency, has to change.

 

 

 

Advertisements

7 thoughts on “Aging and chronic illness

  1. thepsychiccow

    Wow Jak, you have addressed an issue that has been bothering me for quite a while now. I’m 53 and like you all my symptoms went off the scale once I hit perimenopause. There is absolutely nothing on the internet as regards info on heds once you hit middle age. I’m beginning to wonder if people with our conditions actually make it to old age. It is a scary thought but one I seem to think about a lot these days. I hope I’m wrong. 😢 Joan

    Like

    Reply
    1. Jak Post author

      It’s an understandable fear Joan and I feel the same way regarding my mast cell disease. I’m not quite as concerned about EDS affecting lifespan though, as I inherited it off my Mum and she’s 77. Having said all that, she did have a collapsed lung in her late forties for which no cause could be found, which I am now certain was EDS related. So there can be very serious complications from hEDS in later life which aren’t really known about. Jak x

      Like

      Reply
      1. thepsychiccow

        I think it’s the heds, disautonomia cocktail that’s scares me really Jak but your Mom’s age is definitely reassuring even though I know she suffers quite a bit at this stage. The lack of knowledge amongst the medical profession and charities as regards our age group is probably just as frightening as not teaching old age. By the way I’m still peri menopausal at 53. 😕Great blog. There is something very comforting about knowing that other people are suffering like me both physically and mentally, as screwed up as that sounds. 😔 Joan

        Like

        Reply
  2. Janjay

    Feels like you read my mind with this one Jak! There seems little general info to help anyone work out what is relatively normal as you age but when it comes to people with rare diseases there is nothing at all. I don’t think it’s that people don’t make it to old age, as Joan fears, but more an emphasis on helping younger people improve their lives and understand their diagnosis. However , as you say, many people are well past youth before they even get a diagnosis and symptoms can kick off or worsen at any age!
    I agree this is an omission by the various charities and I have been thinking of approaching them on this very point. Jan x

    Liked by 1 person

    Reply
  3. Lindsay

    you raise such an important point! with POTS, everything I see says that it affects women “of childbearing age”. when i was first diagnosed, i mistook that to mean women with POTS just stopped having POTS after menopause. naturally, that made me really excited for menopause.

    i’m still in my 30s, so i have a little time left, but have met plenty of women over the past few years in their 50s, 60s and 70s with POTS. women past menopause absolutely still have POTS, for whatever reason it’s just not talked about. i don’t understand why.

    Like

    Reply
    1. Jak Post author

      While I don’t have POTS Linds I absolutely have dysautonomia, and this has gotten worse with middle age not better 😦 Our veins deteriorate as we get older and blood pressure issues worsen with age in healthy people let alone those who already have problems. The thing that makes me mad about dyautonomia is that most of us have chronically low blood pressure, which is always seen by the medical profession as a good thing! No, not good. Bad, bad, bad!! My Dad, who is otherwise very fit and healthy, has always had chronically low blood pressure and a slow heart rate (possibly because he’s been so fit and active his whole life). When he hit 70 he started really suffering with dizziness, nausea, feeling faint and being disorientated yet he receives no treatment because his low bp is always seen as ‘good’. That has to change, and low bp should be seen in the same troubling light as high bp! x

      Like

      Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s