Friendships

Today I read another wonderful post by Lindsay over at Musings of a Dysautonomiac, a fellow blogger who has POTS and MCAS.   I ‘met’ Linds through my blog and am now privileged to class her as a friend, not in any kind of traditional way because we live in different countries and are online at opposite ends of the day, but in my heart.  I look forward to her posts and Facebook messages, rally for her and struggle with her – all without saying a word because I don’t have the energy but I hope she knows that I see her and care about her life.

It’s a good job I make new friends every now and again because I’ve lost all my pre-illness mates.  Every single one of them.  Sometimes I’ve let the relationship go and sometimes they have but the end result is the same, and no matter who the instigator is saying goodbye to a relationship you once held dear is painful.

Like Lindsay, I traditionally got along with men better than women.  Having said that, I always had one or two very close girl friends but they were often people who were in some way broken or needy and, being a caring person, I often seemed to fall into the parental role in my friendships which of course turned to crap when I got ill because I could barely take care of myself let alone anyone else.   I’m also not a girlie girl and just find the banter and straight-talking attitude of blokes easier to handle than the complex subtleties of women which I often find bewildering.  But then I got sick and realized that, on the whole, men don’t do illness.  They make rubbish carers and simply don’t know how to react around sick people, especially a sick person who used to be feisty and independent and who is now…………well, still feisty but more needy 😉

After all these years I’m not even sure it’s possible for me to have good friendships with healthy people.  They just don’t get it.  Have no clue what my life is like or the struggles I face every day.  And I’ve found I lose patience with their whining over inconsequential shite and am frustrated by how little they value their lives – their healthy, active, vibrant, full of possibilities, lives.  And don’t get me started on how much they moan when they have a cold!

Occasionally, though, healthy people surprise me and there are two or three people at my Camera Club who do make an effort to ask the question “how can I make it easier for you to do x, y or z” and to include me in activities, for which I am hugely grateful.  It’s a lot of pressure though.  Here they are making special efforts to arrange outings and activities which I can take part in, but then I feel like I absolutely must take part because of all the trouble they’ve gone to.  So what happens if, on the day, I wake with a migraine and can’t move, or have anaphylaxis and end up in bed puking?  I let everyone down and although they try not be annoyed I know they are because, after all, they’ve gone to all that trouble just for me and the least I can do is show up.

Having close friendships with other sick people, however, is also challenging.  Neither of you has any energy and trying to find a day to meet up when you’re both well enough can be a struggle.  It’s vitally important you don’t just have illness in common too, otherwise all you do when you get together is talk about being sick which would be monumentally depressing.  I met my now best mate at an M.E. conference about 15 years ago and neither of us are particularly girlie girls.  We’re both creative and practical, like nature, gardening, being outdoors and have renovated houses, so have stuff besides our shared disease in common though I’ll never understand her passion for mines 😉  I honestly think I’d lose my mind if I didn’t have her in my life – no pressure then K!

Friendships when you’re chronically ill are tricky.  I’d love more friends but realistically know I don’t have the energy, especially if the friend is well and expects to meet up regularly or do physical activities.   Friendships with other sick people are easier in some ways yet harder in others – when you both lack energy there is a tendency to not communicate for months on end which, while understandable, is lonely.  And while online friendships are great there’s no substitute for meeting up in real life and actually being with another person.

If you’re lucky enough to find someone you click with, who shares your sense of humour, your interests and who gets you and your disease it’s priceless.  I’ve told my best mate that, should she ever threaten to break up with me, I am chaining her up in my shed so’s she can’t escape 😀  To all my online friends, whose caring, sharing, humour and empathy keep me going every day of my life “THANK YOU!” for being there and for being you.  You make an otherwise unbearable life less lonely.

Disease Denial

I’d guess that 100% of us are in some form of denial when we’re first diagnosed with a chronic illness.  Obviously we know we’re sick and for me personally all three of my diagnoses were a huge relief because finally I could put a name to my symptoms and stick my tongue out at all the doctors who’d told me there was nothing physically wrong, but there was still a massive amount of rejection of the fact that I would never get better and my life had changed forever.

When we’re first diagnosed we go online and read about all the success stories.  People who’ve had dry needling and physio and have gone from needing a body cast and a wheelchair to running the London Marathon and we think ‘yep, that’ll be me’.  Only it usually isn’t, especially for those of us who are diagnosed with hEDS in our middle or later years and who have already had decades of untreated trauma to our joints and ligaments.

In the case of M.E. the denial can be particularly strong.  The internet is full of people who have been ‘cured’ and we don’t twig that they never had M.E. in the first place because it’s a disease with no test and widespread symptoms which can be mistaken for scores of other illnesses.  Even my Doctors told me I’d soon be better because “most people make a full recovery within two years” which is probably the biggest fib I’ve ever been told.

I went online in the early years of M.E. and read about people recovering after ice baths, gluten-free diets, hyperbaric oxygen, bee propollis, lymphatic drainage, Ampligen and 2000 other treatments and thought “right, I’ll try every single one cos I’m 26 years old and I need my goddamn life back”.  So my parents spent in excess of £20,000 on everything from reflexology to experimental electrical stimulation and it made not one iota of difference.

People with M.E. can, and occasionally do, improve but from my years of experience of the disease I’ve never come across anyone yet who’s made a sustained improvement because of some weird or wacky pill or therapy.  Nope, it’s been the same thing in 99% of cases and a recent story on the ME Association’s facebook page proves the point.  For most people, any kind of recovery includes the following:

  • Rest
  • Good balanced diet, with plenty of antioxidents
  • Avoiding stress
  • Drugs to help with sleep and pain
  • Pacing
  • Gradually increasing activities over a number of years (sadly not days or months).

It’s that simple, yet so incredibly difficult hardly anyone achieves it and sometimes despite doing all the right things no improvement is seen.  I especially wonder if it’s even remotely possible to achieve improvement if you have kids because there’s no way on earth of having a stable routine every day, or getting the rest and sleep you need, when you have a family.  And it’s absolutely not do-able if you continue to work.  That’s hard to hear isn’t it?  And even harder to accept.

I know people with M.E. who have been ill for two decades yet are still in denial.  They’re stuck in the grief and pity stage and haven’t moved on to the acceptance stage.  They’re constantly online expressing amazement that their symptoms wax and wane or are worse after activity yet still won’t change their lifestyles to allow their symptoms to stabilize.  Asking their friends to pray for them or send them positive vibes, frantically still trying to find peace.  It makes me so sad.

I can tell my friends who’ve reached acceptance because they rarely mention their disease(s).  They talk about their pets, or books, or telly programmes, or how shit their Carers are, or the wildlife they see from their windows and there is nothing about their pain, physical or emotional.

I was listening to an Australian radio interview given by Jen Brea and her husband last week and she made a very potent point.  That it’s a fine line to tread between acceptance of your situation, living in the moment and finding joy and peace, yet never giving up hope that science will catch up and find a cure or effective treatments.  I think people who are in denial might feel that if they accept their situation it means giving in and giving up, when of course it means nothing of the kind.  I am completely at peace with my situation yet there is always, always hope that there will be a breakthrough, particularly in the case of M.E. and MCAD, and a treatment will emerge which will give me back at least a portion of my healthy life.  But in the meantime I have to live with my diseases and stop wasting my precious energy searching for the impossible.

When I come across people in denial, especially if they’ve been ill for several years, the blunt side of me wants to say “FFS.  Which part of the words chronic or incurable is it that you’re not understanding?!” which I know sounds harsh, but if there were an effective treatment out there none of us would be suffering.

Ironically, it’s only when I gave up hope of ever recovering and accepted that I was sick and I’d be sick forever that I actually started to improve.  For the first 6 years I’d used every ounce of emotional, mental and physical energy I had trying to research and try treatments.  But my poor brain wasn’t well enough to be on every forum known to mankind or to be spending hours each day reading other people’s stories.  My emotions weren’t well enough to cope with the continual excitement and hope of trying a new therapy and the inevitable grief and depression when it didn’t work, or more usually made me even sicker.  My body wasn’t well enough to cope with weekly trips to the therapist and the hours and days afterwards spent trying to recoup my energy.  In trying to get better I was actually making the whole situation worse.

However, it’s absolutely pointless telling people who are in denial that they are in denial because they’re not ready to let go of their old life and who can blame them?  All you can wish is that they finally find peace and acceptance, which might not make them physically better but will definitely make them happier.

 

Weekly roundup

My week got off to a flying start with me having the most fun anyone can on their own in a spare bedroom.  One of the themes for our competitions next season at Camera Club is water so I’ve wracked my brain to come up with something unusual.  I decided to try photographing exploding water balloons, so bought myself a cheap kids paddling pool to catch the fall-out and got set up using make-shift gear.

I hadn’t a clue what I was doing and people who do this kind of photography usually have expensive kit which allows the camera to flash at exactly the moment the pin pops the balloon, but I had to make do with my own reflexes and dodgy timing.  It took 20 goes, by which time I’d nearly flooded the house, but eventually I got the shots I wanted.  It was huge fun but I’m not going to do it again in a hurry 😉


Out of the blue on Monday my best mate asked if I’d like to meet for lunch.  She’s been really busy lately plus feeling rubbish, so it was lovely of her to make space for us to have a catch up.  I only see her at most twice a month as we live 45 minutes drive apart, so I make lists of stuff to tell her which she finds hilarious.  If I don’t write it down though I can’t remember what I did yesterday let alone a fortnight ago.  If I had a working memory I’d be truly awesome 😉

After a lovely afternoon with the bestie my week basically turned to shit and I lost 3 days to a brutal ovulation induced migraine, along with associated crushing fatigue and vomiting.  On the upside I barely ate for days and consequently  lost 2lbs, so silver linings and all that 😉

I knew the migraine was coming when I woke on Wednesday morning.  Sometimes they arrive out of the blue, but on the whole I get the classic prodrome phase, ie the 24-48 hours before the pain starts when I realize something’s afoot.  This can be a ravenous and insatiable appetite, usually for carbs or sugar.  Or boundless, almost manic, energy where I get all sorts of jobs done.  Or like this week, an overwhelming heavy, achy fatigue and falling asleep left, right and centre usually accompanied by nausea.  The pain started at about 7pm Wednesday night and I didn’t feel normal again until Saturday afternoon.  What a waste of my life.

Sometimes I can battle through despite the pain but this migraine was so severe every time I moved my head I felt like someone was battering my brain from the inside, consequently I had to stop in bed.  I did contact another 2 solicitors re my PHI case but so far haven’t heard back.  I also wrote to the human rights organization Justice, not because they can help me but just to highlight the issue and how some disabled women with PHI policies are being discriminated against so that everyone else can be equal.

In true summer fashion it has piddled down almost none stop for 2 months here in the north of England, but on Saturday we had a dryish day and, feeling half human for the first time all week, I palmed Bertie off with my folks and headed off down to the river.  For my upcoming big birthday I’ve treated myself to a new photography hide, which is a folding camping chair with a hood which comes over to form a kind of tent.  It’s way cool and there’s plenty of space inside for me to sit and have my tripod and camera in front of me.  There was even room for me to squat for a much needed pee and all in broad daylight on a public footpath 😉  I was hoping for a glimpse of the elusive Kingfisher who did arrive then got spooked and buggered off again, so I sat and watched some Sandmartins feeding chicks in their nests on the river bank.  It was lovely to be out in the fresh air, even if the second I packed all my gear up and started to head back to the car the heavens opened and I got bloody drenched.

While my Mum has been really ill the past few weeks she hasn’t been able to drink as much, and it’s been lovely.  We’ve had actual conversations where she has been lucid and rational and not spent the whole time giggling.  However she’s on the mend now and the drinking has started again in earnest, almost like she’s making up for lost time.  How anyone can be plastered at 9.30 in the morning is beyond me and by 4pm she’s away with the fairies.  I miss her.  I try to feel compassion but instead usually just feel sad and still a little bit mad if I’m honest.

95% of the food I eat is organic and freshly prepared, but some days I’m too sick to make anything and have to rely on pre-made stuff from the supermarket.  I choose items with as few ingredients as possible and seem to get away with it.  This week I discovered Quorn fishless fingers and was gobsmacked at how much they taste like regular fish fingers!  It’s actually really nice to eat junk food every now and again, especially when your appetite has vanished and you feel sick to the pit of your stomach.  And, yes, that is tomato ketchup on the plate – fuck it, I was feeling sorry for myself and it cheered me up!

No time to cook

It’s been some considerable time since I wrote anything diet/food related on my blog, so I thought I should explain why.  When my MCAD finally exploded back in 2012 I was having anaphylaxis every time I ate anything and sometimes after just drinking water.  I have never been so terrified in all my life and honestly thought I would die, especially as the Doctors I saw just looked at me like I was nuts and told me it wasn’t possible.  I was given diagnoses like gastritis and IBS, which I knew were absolute bullshit but I was told “it’s not cancer” and I should be grateful, then just left to get on with it.  Thank God for the internet and eventually receiving my MCAD and HIT diagnoses from Dr Seneviratne.

For the first two years following my diagnoses I was naturally obsessed with food.  I spent months wading my way through the information online on low histamine diets, adapting recipes to be low in histamine, experimenting and finally finding a plan I could stick to and which (on the whole) controls my symptoms.  I am so grateful to no longer pass out after I have a meal I can’t even tell you, though I’m not always symptom free.  That’s because my mast cells react to a whole host of things other than food, so it depends on any one day how full my histamine bucket is as to whether the mere act of digestion (which produces histamine!) sets off a reaction or not regardless of which food I’m eating.  But the symptoms aren’t anywhere near as extreme as they used to be and, although still not pleasant, are liveable with.

After my condition stabilized I really began investigating low histamine foods and made the shocking discovery that hardly any foods have been tested for their histamine content and every diet online is based, for the most part, on guesswork.  It rocked my world really because my life depends on keeping histamine at bay, yet the information on which I was basing my diet couldn’t be trusted.  I could still be eating ‘safe’ foods which are nothing of the sort and may have been cutting out foods, like egg whites, for absolutely no good reason!  What a bloody nightmare.  So I began experimenting again and discovered I don’t react to baker’s yeast, small amounts of lemon juice, vinegar, stone fruits or fresh berries though chocolate is still off the menu *sob*.

By now it’s 2016, I’m in peri-menopause and am having to contend with extra symptoms on top of the dozens I already have.  My Mum has been diagnosed with severe COPD and Emphysemia, is in heart and kidney failure and has become an alcoholic, while my Dad is in the early stages of Dementia.  They both need help with daily living and the job has fallen to me (quite why it hasn’t fallen to my 3 healthy brothers, their wives or adult children, three of whom ironically work for Home Care Agencies, is another story).  It’s hard enough keeping my own life and home going and I’m finding keeping two homes and three lives going tough.  I’m so busy I meet myself coming back, then am so exhausted from all the extra work and my rampant hormones I literally can’t think straight.

These days I no longer have the time or energy to spend hours in my kitchen thinking up and experimenting with new recipes.  In fact, I spend one day a week cooking then shove what I’ve made in the freezer as I don’t have the time or energy to cook myself dinner every day, let alone anything extra.  In any event, I’ve become quite disillusioned with ‘low histamine’ diets because neither I, nor anyone else, have any idea of the histamine content of individual food items and I now use all sorts of ingredients in my dinners which would cause outrage if I were to put them online.  For example, this week I happened to be in Sainsburys and bought 2 jars of pre-made sauces – don’t fall off your chair in shock 😉  One contained concentrated lemons and the other contained additives!  I know for a fact I won’t react to either, yet if I put them on my low histamine shopping list I’d be crucified, because according to the lists online they contain things I shouldn’t be eating.  Only of course no-one knows if I should be eating them or not because they haven’t been tested for histamine – try telling the low histamine zealots that though!  Obviously my ‘low histamine’ diet has helped my symptoms enormously so obviously some foods are higher in histamine than others, but whether I needed to have cut out all the foods I have is anyone’s guess.  My reduction in symptoms might literally be down to cutting out spinach, cheddar cheese and fish and I’ve been unnecessarily cutting out 30 other foods for no good reason.  Or it might be that I absolutely have to cut out 30 foods in order for my diet to be low in histamine.  I have no idea and neither does anyone else.

According to people like the Low Histamine Chef and others I shouldn’t be eating low histamine anyway, but I should be eating anti-inflammatory.  Only there’s about as much robust evidence for anti-inflammatory diets as there is for low histamine diets.  Point me to the research on people, not rats, that measures inflammation after ingesting a particular food and I might change my mind.  Only of course it doesn’t exist.  It’s as impossible to measure inflammation in our bodies after we’ve eaten a specific food as it is to measure histamine in our bodies after we’ve eaten a specific food.  It’s all such bullshit yet is talked about by these self-proclaimed ‘experts’ as fact.  And just because they include research references at the end of their articles doesn’t make it fact either.  Does anyone actually read the research?  Is it a properly conducted, double blind, randomized, controlled trial which has been peer reviewed and published in a nutritional journal?  Because if it’s not it’s not worth the paper it’s written on.  When I was investigating low histamine foods, I discovered that the only reason egg whites were included in low histamine food lists is because of a tiddly trial done on mice in the 1950s, which was never reviewed or published.  The way food was made and stored in the 1950s bears no resemblance to the way food is made and stored in 2017, so quite why this pseudo half-experiment is quoted as fact in the low histamine world astounds me.  All this stuff plays on the absolute desperation of very sick people and it makes me furious.

It extends beyond the world of histamine though.  For years saturated fats were ‘bad’ for us as they raised cholesterol and gave us heart attacks, until it was discovered that actually heart disease is a much more complex issue, trans fats were much more unhealthy than saturated fats and the jury is still out on how big a role saturates play in plaque formation.  Then salt was bad for us, until it was discovered that eating too little might be as bad as eating too much, though again the debate rages on.  Now it’s sugar that’s the demon, until in 30 years time it will be discovered that without sugar our energy levels are half what they used to be or some other such nonsense.  If we’re honest, we know very little about digestion, diet and the impact what we eat has on our health, and I suspect genes and how we as individuals process food will turn out to be the determining factor for health, rather than the foods we eat per se.

I admit I’m no expert on food and the information here on my blog is simply based on my own thoughts and experience.  And my experience is that I am currently managing my symptoms OK with the diet I choose to follow and, due to changing circumstances in my life, I no longer have the time or energy to experiment with new recipes particularly when I’m not even convinced they are low histamine as I have no evidence to back that theory up.  So apologies to anyone reading my blog and hoping for loads of inspiring recipes and foodie facts.  Having said all that, I hope the information and recipes listed in the menus at the top of my site are useful in your own journey through the histamine maize and at least it’s all free and I’m not making money off the back of other people’s suffering.

Boom & Bust

Following on from my post about pacing, I want to talk about boom and bust.  I have a lovely friend with severe M.E. and on her Facebook page recently she wrote (and I’m paraphrasing): “The differences in what I can do physically and mentally day to day are shockingly drastic. The other day, I folded clothes while talking on the phone, ordered food online, hoovered one room (for the first time– I was having a good day), did some light cooking, wiped down some surfaces in the kitchen, carried a tall lamp from my upstairs bedroom into the living room and watched tv with my husband — all without getting neuro symptoms or taking a nap.  Today I’m back in bed before even having breakfast and I had to rest in total silence and darkness for hours before even being able to write this because my brain is struggling in molasses”.

I love her to bits but I did want to grab her and shout arrrrggggghhhhh really loudly in her ear’ole 😉  This is a classic case of booming and busting.  In other words, doing all sorts of activities on a “good day” then wondering why you’re poleaxed for the week that follows.

If you had triple heart bypass surgery you wouldn’t expect to get out of bed the next day and hoover your lounge room carpet.  You would take things easy, gradually doing little bits and gauging your symptoms.  If your pain got worse you’d realize you’d over-done it and cut back, taking months to gradually build up your strength and tolerance to activity.  Yet people with M.E. think that the second they wake feeling even marginally human they should be able to go about their business like they’re not sick at all, then wonder why they feel like they’ve been hit by a train as a result. It’s a bit nuts when you think about it logically.

I speak as one who, for the first 6 years of her illness, thought that one day I’d just wake up better and be able to resume my life like nothing had happened.  I was in complete denial that I would never be well again and that my old, healthy and active life had gone forever.  I was no longer the person that I had always been and when you finally realize that you seriously want to slit your wrists.  However, your old life is dead and just as with any kind of grief you have to work through pain, anger and despair before coming to terms with your situation and finding acceptance.  It’s hard to do this alone and that’s where a trained professional may be useful.

After you’ve worked through your grief and denial and finally accepted that you have a new life you have to figure out the rules of that new life.  This is where pacing comes in.  I’m no expert and can only talk about my own experience, but I did get myself from being almost totally bedridden for 10 years to being able to live independently and I think routine was the key.  I had the same schedule every single day.  I don’t care if I woke feeling like Usain Bolt I stayed in bed and rested, doing no more on a good day than I did on a bad day.  Sounds easy doesn’t it?  But you have no clue, like seriously no fucking clue, how hard it was.  When I hadn’t been out of bed for three months and suddenly woke feeling if not exactly well at least like I wasn’t dying and not being able to use that precious day to do something other than staring at the same four walls of my bedroom – the same walls I’d stared at for the entire previous year.  Or to chat to my best friend for a whole hour on the phone after not speaking to a soul all week. Or to walk to the shops and be surrounded by people after months of total isolation.  Or to go out to dinner when I’d lived on cereal and frozen meals for one for the past six months.  The temptations faced by Jesus in the desert are nothing in comparison to the temptations faced by M.E. patients who are having a ‘good day’.  However I thought of my schedule as rehab and, just like the bypass patient recovering from major surgery, I needed to allow my body to heal before gradually increasing my activity levels.

The worst part is that, despite spending years solidly pacing and denying myself any kind of pleasures followed by thirteen years of continued pacing and only allowing myself the odd pleasures, I am still not well.  Not by any stretch of anyone’s imagination.  In fact, I don’t know of any patients who have had severe M.E. that have fully recovered, which is a bitter pill to swallow.  I have no more energy than any other M.E. patient.  What I do have is stamina and it’s that which allows me to do activities.  I also no longer wake each day feeling like I’m dying, or so sick I wish I were dead (and I did both for nearly a decade).  I still have pronounced symptoms including brain fog, feeling fluey, pain, muscle weakness, insomnia, nausea etc, but they only stop me doing things if I don’t stick to my pacing schedule and, on the rare occasions I take a calculated risk and over-do it the exacerbation in symptoms only lasts a few days not several weeks/months like they used to.

I still have a glass ceiling beyond which I can’t reach without risking a relapse.  I live a very structured life.  I haven’t been on holiday since 1996, not because I’m unable but because my body would rebel.  It’s unrealistic to live 50 weeks of the year in gentle, quiet, routined isolation then expect my body to cope with planning, packing, travel, vibrations, motion sickness, changes in climate, food, water and routine.  Not to mention stupendous amounts of stimulation in the form of noise, people, bustle, chatter with my travelling companion, scenery, things to do and the utter chaos of the outside world.  I wouldn’t expect a triple bypass patient to cope with all that the day after surgery and I don’t expect my sick self to cope with it either.  Ditto going to the cinema.  Or out in the evenings when I’m at my lowest ebb in terms of stamina.  Or reading.  Or cleaning the bath.  Or hoovering.  Or painting the Utility room, even though it desperately needs doing and my pre-illness self was perfectly capable.  And 1001 other situations I still avoid like the proverbial plague.

M.E. patients all want to get better but we want a quick fix.  A diet, a pill, a therapy which is going to instantly cure us.  Most can’t accept that currently the only way to improve our symptoms is years of dedication, hard work, deprivation and isolation.  And to be fair you can’t blame them.  But this is the hand we’ve been dealt and we have to be savvy about it and make a life that is as good as it can be.

I am never going to be well and able to do the things I could pre-M.E. and I have to make a conscious effort not to dwell on that or the grief, even 23 years down the line, would overwhelm me.  This is not the life an energetic, intelligent, bubbly, passionate, independent, hard-working woman would ever choose and I fought against it for years, with every ounce of my character, strength and determination…………and lost.  M.E. beat me every single time.  So I had to call a truce.  Had to give up some parts of my old life in order to keep some parts of my new life.  And at least I now have a life, when for ten years I had none.

 

 

 

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.

 

 

 

Weekly roundup

I’ve got to be honest, this week hasn’t had many saving graces.   My Mum is still really sick but despite ringing the health centre at 2pm last Friday afternoon I couldn’t even get to speak to a Doctor let alone see one.  The only thing available was an appointment with the Practice Nurse who said her chest and throat were fine and she didn’t need any medication, which we knew was bullshit and Mum continued to decline over the weekend.  You can’t ring for an appointment on a Monday morning because the phone is rammed, so I told my Dad to physically go up to the Health Centre for 8.30am and get her in to see a proper Doctor as an emergency.  Even at that time in the morning there were 10 people waiting in the queue infront of him (!) but he did manage to get her in to see a Doctor at 10am, who prescribed not only another lot of penicillin but six steroid tablets a day for a week and a third inhaler.  FFS, if she’d been prescribed those on Friday night she wouldn’t have had the horrendous weekend she did.  Makes my blood boil.

She was only slightly better by Wednesday and still had a raging sore throat.  Fortuitously she had her yearly appointment with the respiratory nurse, who told her the sore throat was a severe case of thrush due to her steroid inhaler.  Why the hell hadn’t this been picked up by the practice nurse or the bloody doctor?!  So she’s now on a spray for her throat and has been taken off her steroid inhaler for a month and given a different one.  She’s still coughing her lungs off but at least she’s now started sleeping better and eating again, after a month of not doing either.

To make things worse, my Dad got a call from the Care Home where his Mum is to say that they think she’d had a heart attack and had slipped into a coma.  She’s 104, can’t walk, can’t hear, can’t see and is totally doolally so to be fair her death would be a blessing.  My Dad and his Sister then spent most of Thursday and Friday sat next to her bedside, only for her to rally and ask for some dinner!  So it looks like she’s not dying after all which I’m not sure is a good thing.

Inbetween all that drama I had the news about Liberty not taking my discrimination case, and heard from Tesco that they’re not upholding my complaint about Bertie’s insurance being increased by 700%, so I was proper down in the dumps.  To add insult to injury I seem to have pulled something in my left hip and something in my right shoulder, so I’m hobbling and having difficulty using my arm.  No clue how either injury happened.  There are times when life seems like one long struggle and I simply don’t have the energy to keep climbing uphill.

To take my mind off everything I decided to work on a photography idea I nicked off the internet.  My cousin actually thought it was real and that I’d painted the landscape scene myself lol!  If I could paint like that I’m fairly sure I wouldn’t be as skint as I am 😉