Challenging misconceptions

I’ve heard just about every insult and misconception imaginable in respect of my illnesses over the last two decades.  From my biological dad’s “there are people in the world worse off than you, pull yourself together” comment when I’d been told I was critically ill with M.E. and might not make it through the night, to the common “M.E…..hmmm, isn’t that where you feel tired a lot?” (if only!) to the “have you not tried some painkillers?” in respect of my EDS (bugger, why didn’t I think of that?!).  Trust me when I say these remarks still rankle even if you ignore the fact that people you barely know feel they have a right to question you about your private life, make judgements about your situation or give medical advice when they have zero qualifications and know nothing about the diseases from which you suffer.

I do now take every opportunity, however, to set the record straight.  I’ve given up my right to privacy to discuss with total strangers how my body fails me and the repercussions this has on my daily life.  I admit to using shock tactics “yeah, I went to bed last night and woke up with a dislocated jaw” alongside graphic details of my bowel habits or how often I vomit, which usually shuts them up but at least they slink off having learned something, even if that something is to mind their own sodding business 😉

I was at my Camera Club last week.  My back was screaming and as I apologised to the lady sitting next to me for squirming in my seat she said “is there nothing they can do?” which was my cue to explain that EDS is a genetic disease and there is no cure.  “What about pain relief?” was her next question, which then gave me the opportunity to discuss mast cell disease and my allergies to all things chemical.  The poor women probably wished she’d never asked, but having done so at least she came away from the conversation with a smidgen of information about my illnesses and empathy for my situation.

On a completely different topic, my lovely dog walker this morning was telling me about a friend of her daughter’s who hasn’t been round for a while because she’s “not well”.  I asked what was wrong and my friend said “she’s fatigued, has joint pain, is sleeping a lot and generally feels unwell which, let’s face it, is called being a teenager!   All the blood tests she’s had done have come back negative so there can’t be much wrong with her” which was my cue to tell her that M.E. is the biggest cause of long-term absence in school children and the problem with diagnosis is that there isn’t a simple test which can confirm it.  My friend had no idea children were affected by M.E. and you could tell felt very sheepish that maybe there actually was something wrong with this teenager and she wasn’t just being dramatic.

People are naturally curious about difference.  If they see someone using crutches they’ll often ask “what happened?” expecting you to say you’ve broken your leg so they can sympathise, then are mortified to learn you have a lifelong disease.  If it’s a genuine question I’ll try to put them at their ease while at the same time explaining in a couple of sentences that I was born with a genetic disease called Ehlers-Danlos Syndrome which affects my collagen, which means I can have lots of joint injuries.  They’re then usually embarrassed as all hell for asking but they’ve still learned something and that’s my goal.

Of course, not everyone is asking out of kindly curiosity.  Some people are dismissive, rude and downright nasty.  A young lad shouted out “lazy bitch!” through a car window at me a couple of years ago as he drove past me on my mobility scooter walking my dog.  I’ve often been told to “get more sleep”, “exercise more”, “find the love of a good man” or “have a tipple” (if only!) and my stock retort has become “sadly I don’t think a glass of wine or an extra twenty winks is going to cure my crippling genetic disease” at which point they usually have the decency to blush.  And if they’re being really rude my retort is “I was born this way.  Were you born a rude, ignorant twat lacking in social skills or have you had to work at it?” 😀

On the whole, though, most people don’t realize they’re being insensitive when asking questions about my health and/or lifestyle.  When I was at my Camera club committee meeting recently we were discussing who should answer queries made via the Website.  As webmaster I assumed it would be me, but the Treasurer said in a pitying voice “but what about when you’re ill?” which really put my back up.  For a start I’m ill every fucking day of my life and for seconds if I couldn’t do the job I wouldn’t have volunteered for it.  I’m sure she thought she was being considerate but honestly it just felt patronising and like I was being singled out as inadequate.  If I need help I’m a grown woman perfectly capable of asking for it but until I do it feels rude for someone to make assumptions about my abilities.

I’ve made a conscious decision to stop being embarrassed about being sick and to stand up for myself.  I wrote a Facebook post about endometriosis recently, admitting that it hurts to pee and poop in front of 100 people many of whom are male and acquaintances rather than proper friends.  But, y’know, more than half the population bleed from their vaginas every month and I’m sick to death of acting like it doesn’t happen or like it’s some kind of shameful secret.  It’s as normal as eating and breathing and it’s about time women owned it.

I’ve done nothing to cause the situation with my health yet often in the past I’ve been made to feel by society that I’m somehow culpable.  Bad.  Weak.  Less than.  That I should be ashamed of not being healthy and am a burden, a drain on the nation’s resources.  I’m none of those things.  In fact I know non-sick people who receive more health care than me (pregnant women/new mothers for example) and I’d love to see how some of those who look down on me would fare living alone for over two decades floored by illness, lacking in resources, help and care, battling the medical profession at every turn, taking on a rescue dog and then looking after two sick, elderly parents.  I’d wager I’m more resilient, resourceful, hard working, determined and stronger than most of the healthy people I know.   And let’s not forget that despite my struggles, limitations and shitty health I’m one of the most talented photographers to attend my Camera Club in its 30 year history – stick that in your pipe and smoke it 😀

There is a strong perception that the chronically ill are weak, vulnerable, needy souls who have nothing much to offer.  The truth is my chronically ill friends are the strongest, most selfless, determined, creative, talented people I’ve ever had the priviledge to know.  Be proud.

 

 

 

 

 

 

Advertisements

Weekly roundup

Last week’s Roundup was late, this week’s is early and yet again I’ve not had the chance to do a blog post this week – can you tell life isn’t plodding along as usual?!

The people at the Met Office had forecast a mini heatwave this week so I thought I should shave off Bertie’s thick winter coat so he was nice and cool.  However, the groomer who’s been coming to the house to clip him has let me down on three occasions in the last 6 months so I’ve had to ditch her which meant muggings here had to do it herself.  It takes about 4 hours from showering to the finishing touches, kills my back and hands, then I spend days sneezing as I’m allergic to his dander.  Needless to say I hate doing it and just pray I find another mobile groomer soon.

Both my parents had blood results returned this week and both were abnormal.  My Mum’s cholesterol was 9.6 despite the fact she is on the highest dose of statins available.  She also has a low red blood cell count and abnormal RBC width, alongside new onset acute kidney disease (she already has advanced chronic kidney disease).  My Dad still has an IgA kappa paraprotein band which shouldn’t be there and new onset chronic kidney disease.  On top of that his ECG results must have been abnormal as he’s been referred to the heart unit at the Hospital.  He’s always had a slow heart rate, but it must have now dropped below 60 hence the referral.  He’s also suddenly developed severe dizzy spells and vomited so much last week during one he blocked the bathroom drain 😦  He’s never smoked, rarely drinks, his cholesterol is lower than mine and I’m vegetarian, and he’s exercised his entire life (as in run marathons, done 50 mile bike rides and now he’s nearly 80 still goes fell walking for hours each week), yet he still has a heart problem.  Which just goes to show much of the healthy living advice is bollocks.  He’s been advised that if he has another severe vertigo attack with vomiting he has to call an ambulance, so I’m assuming they think he has bradycardia and is at risk of a heart attack.

Wednesday night I attended my first committee meeting for my Camera Club.  I’ve taken on a volunteer role which means I can now attend committee meetings if I so wish and I wanted to discuss a few points with the other Members.  It was an interesting experience.  It’s obvious that some Members have very busy lives and they simply don’t have the time to carry on with their posts on the committee but will they give them up?  No.  The job just continues to be done badly because they can’t hand over their power to anyone else.  It’s nuts to me but then I don’t have much of an ego really and certainly wouldn’t put my own desire to feel important over the best interests of a Club full of other people.

I went to bed following the meeting fine……..and woke up Thursday morning barely able to move.  Something’s happened to my back again and having just got it right from last month’s shenanigans I’m gutted.  This time the pain is only on the left side but it’s probably the most pain I’ve ever been in with my back – fucks knows what I’ve done but I am miserable 😦

This weekend is my best mate’s birthday.  She’s spending the day with her other half so we’d arranged on Thursday night to go for pizza then to a comeday club in the city.  Thanks body for crippling me on the one day in the year I was doing something fun and different.  I had no idea how I was going to cope as I could barely drive the car but I ploughed on and had as good a time as possible bearing in mind sitting was agony.  I barely got a wink of sleep that night though as I couldn’t find a single position which wasn’t painful.

The mini heatwave arrived, the first warm sun we’ve seen since last August, and I was stuck in bed sleep deprived and in pain.  There are days I fucking hate my life.

The reason I’m doing my Roundup today and not on Sunday is that tomorrow I am attending a Photography day 80 miles away.  I’m having to leave the house at 7.45am and probably won’t be back til 8pm, which is a massive undertaking on a good day and I have no clue how I’m going to get through when I’m in this much pain and sitting is like a form of torture.  FFS.

As if all that weren’t bad enough I heard back from the Financial Ombudsman’s Service and they have rejected my PHI complaint.  I now have until 30th April to decide if I want to appeal to the actual Ombudsman, which I probably will as I have nothing to lose.  I am INCENSED that disabled women can be discriminated against and it is fucking legal.  Legal!  How can treating me differently to men or healthy women ever be justified?!  The thing that makes me more mad than anything though is that no-one gives a shit.  I’ve tried to get everyone from the Pension’s Minister to the Disabled Law Centre to the media to Liberty interested and they couldn’t care fucking less.  Well, I’m not an immigrant or an ex Russian spy so why would they?

On that cheery note I shall love you and leave you.   Until next week my friends.

 

Weekly roundup

The Eagle eyed amongst you will have noticed that my Roundup post is a tad late because I’ve had such a busy week this is the first time I’ve had the chance to sit and write a post.

Monday didn’t start off well.  I go into town to help my parents and as I’m sauntering along to the front door of Sainsburys to get them a bit of shopping I see my lovely friend Linda from my Camera Club.  She waves and I think to myself “ahhh that’s nice, bumping into Linda” and then my heart suddenly drops like a stone.  Shit!  SHIT!!  I’d totally forgotten I’d actually arranged to meet Linda outside the door of Sainsburys so that we could go to a cafe for lunch together.  I was 20 minutes late, she’d been trying to ring me but I’d left my phone at home and she was worried sick I’d been taken ill or collapsed somewhere.  I was in my wellies and had Bertie in the car, so I had to make a mad dash to my Mum’s house, drop the dog off and hare back round to the cafe.  I loathe people being late and by now I’d been keeping Linda waiting for half an hour.

As if all that weren’t bad enough, after lunch we both pottered round to the chemist for some bits and bobs.  They didn’t have the denture cleanser my Mum wanted so I left Linda to her shopping and went back to my car.  It’s only when I arrived back at my parents’ house that I remember Linda had told me she woken that morning with a vertigo spell, didn’t feel she could drive so had walked into town and I hadn’t even offered her a lift home, despite the fact she lives half a mile away and the trudge home is all uphill.  I wrote a very grovelling email as an apology and can only hope she doesn’t ditch me as a friend!  My brain was already fairly AWOL due to my M.E. but now I’m galloping towards Menopause it’s almost permanently left the building!

Tuesday I spent the day practising a talk on Photoshop Elements which I gave to the beginner’s photography class that night.

Wednesday was my last Camera Club of this season.  I won’t miss going out in the evenings as it makes me feel proper rubbish, but I’ll really miss seeing everyone and having a focus to the week.  My Dad also re-took his driving test for the second time (which you have to do following a Dementia diagnosis) and we were all delighted when he yet again passed with flying colours 🙂  You absolutely have to be able to drive where we live as there is almost no public transport, so if he’d lost his licence we would all have felt the consequences.

Thursday my Mum had a hospital appointment in the city to have two new hearing aids fitted and I offered to take her so that we could visit a couple of wheelchair friendly shops afterwards for a potter around (we have zero clothes shops in the town where we live).  Now Mum isn’t drunk every day she’s starting to want to do things again and we both enjoyed our afternoon together.  As a bonus she can now also hear and I no longer have to shout 😉

By Friday I was on my knees energy-wise and starting my period didn’t help.  The good news, however, is my recent pain flare is much reduced and this week I have felt almost back to my usual self.  As an added bonus I haven’t had a migraine at all during my period for the first time in several months and my Endometriosis pain was bearable.  Yayyy 🙂

Sunday I had tickets for a Photoshop workshop, which was initially arranged for last month but had to be cancelled due to snow.  We all turned up and waited and waited and waited for it to start, but it was obvious they were having technical difficulties and 45 minutes later we were told it would have to be cancelled again as they couldn’t get the presentation to work.  However, we were all just about to walk out the door when a workaround for the glitch was found and the day progressed as planned.  Sadly I didn’t learn anything I didn’t already know, but it was still nice to have a catch-up with members from other Camera Clubs.

My sitting with my friends’ two kids went well last weekend and I ended up with a grown-up shot for the teenager and a fantasy one for the 8 year old which I’m calling ‘The world at her feet’.

 

Weekly roundup

I appreciate I’ve been pretty fed up in recent weeks so you’ll be pleased to know I’m starting this week’s roundup with something cheerful.  Each year there is a photographic competition between all 52 Camera Clubs in the north of England.  Literally thousands of images are submitted from some of the best amateur photographers in my region and I always feel quite intimidated at the wonderful photographs which beat mine each year 😉  The judging for this year’s competition took place yesterday and I was expecting my usual disappointment when out of the blue I recieved an email to say I have won the trophy for best portrait.  Me!  Lying here in my bed crippled with pain and illness!!  To say I am chuffed to little meatballs is not doing my smiley face justice 😀  I will be presented with my cup in December at an awards ceremony on the other side of the country (why it takes so long is anyone’s guess), so I can only hope I am well enough to attend.

The second piece of good news is that my back pain, which has tortured me for three weeks now, suddenly decided it was bored and moved on to pastures new!  My body never ceases to amaze me.  I can go to bed in silly amounts of pain and wake up the next morning like nothing ever happened.  I’m not saying I’m totally back to normal and am still definitely having a pain flare, but my back is 70% better than it was for no real reason I can find.  Not that I’m complaining.

Wednesday I had to take Bertie to the vets.  He’s prone to fatty tumours and has a difficult to feel one between his ribs which has definitely grown in the past couple of months to over 1cm in length.  However, the vet is 98% sure it’s nothing sinister and we’re just going to keep monitoring it.  Between that 5 minute appointment and his 15 minute emergency treatment last week for his back pain the bill came to £104 ($150).  Eeeekkk!

Wednesday night was Camera Club and I did make it, only to leave halfway through because my back was so painful I couldn’t sit upright for another second.

Thursday the weather was uncharacteristically fine and sunny, which gave me chance to tidy up my tiny little garden following the ravages of winter.  As I’m crouching over cutting off dead leaves I think to myself that it’s probably not my best ever plan, bearing in mind gardening kills my back on a good day and I was definitely not having a good day, but then I thought “fuck it” my back’s hurting anyway so what’s the worst that can happen?  I went to bed that night in agony…………..then as previously mentioned I woke the next morning loads better!  Work that one out!  I’m wondering now if something had pinged out in my back weeks ago and the extended movements I did while gardening maybe pinged it back in again?  Stranger things have happened.

Friday I met my best mate for lunch and had a really great afternoon.  Fabulous food and fabulous company – my life doesn’t get any better than that 😀

Today I have my friends’ two daughters coming over for a photo shoot while they’re on their Easter break from school.  I’m going to try out my new plexiglass on the teenager, faking a rainy window shot, and the 8 year old is going to be sitting on the moon – don’t ask 😉

Before that though I need to get up, get dressed and take the hound out.  At least it’s not raining.  Yesterday Bert had a Vicar of Dibly moment.  He was splashing about in the puddles, stepped in one………..and went up to his shoulders in mud.  He was totally stuck and I had to wade in and rescue him.  Needless to say when we got home he went straight in the shower 😉

Menstrual Migraines

I started charting my migraines in tandem with my menstrual cycle in 2009 in the hopes that I could find some kind of pattern.  Below is my first chart and it turns out that in 2009 I had an almost permanent bad head and migraines which often lasted 3 days straight 😦  The numbers along the top of the chart are the days of my menstrual cycle.  Down the left are the months of the year.  The grey blocks on the left are my actual period (as you can see it didn’t last long!), and the grey area on the right just marks how long my cycle was that month, eg. in Dec08 (the first entry) my cycle was 27 days long and in Jan09 my cycle was 29 days long.  It’s clear from the chart that I hadn’t started peri-menopause yet and my cycles were regular as clockwork at between 27 and 29 days.

M=migraine h=headache

In 2013 I started my low histamine diet but I was so ill at the time I wasn’t able to keep my charting up, so the next set of data I have is from 2015.  I think you can see that after 18 months of eating low histamine foods my migraines have improved substantially and my headaches have disappeared completely, yayyyy 😀  However, you can also see that I am now in peri-menopause.  My periods often last a day longer while my cycles are getting shorter sometimes down to 21 days.

I also think it’s clear from the chart that my migraines are now linked to my menstrual cycle with migraines worse during bleeding, mid cycle and again just before the cycle ends and this pattern has continued.

Below is 2017s chart and as you can see there’s about an 80% chance of me having a migraine while I’m having my period which, as the peri-menopause progresses, are getting longer still having gone from two days in 2009 to sometimes five days in 2017.  There are then zero migraines in the week following my period – happy days :-).  Mid cycle, however, following ovulation which for me is usually around day 12 there is about a 65% chance of a migraine often lasting for more than one day.  Then usually another quiet spell until two days before my period begins when there’s around a 75% chance of a migraine.

So what’s going on with our hormones and why are they giving me a sodding headache?!  There are three main menstrual hormones: oestrogen (or estrogen if you’re American), progesterone and testosterone.  Testosterone is often left out of the hormone equation but I know that for me it plays a big role and is probably responsible for my rampant sex drive at certain times of the month!

In the first few days of the cycle, while we’re actually bleeding, all hormones are very low and my chances of a migraine are high.

By the beginning of the second week (ie day 8) both oestrogen and testosterone are rising, while progesterone stays low.  I don’t tend to have any migraines at this time.

By the end of the second week though (days 12-14) progesterone has started to rise and there is a big spike in oestrogen and a smaller spike in testosterone.  Then at ovulation testosterone declines and oestrogen crashes, again setting off my migraines which carry on until around day 17/18 when oestrogen once again starts to rise.

All hormones are at their highest in week three of the menstrual cycle (ie days 14-21) and again I see a lull in my migraines.

Then at the end of week four all hormones nosedive and the decline once again sets my migraines off.

It’s easy to blame oestrogen for everything as it’s the hormone which goes up and down the most spectacularly, but it may not be as simple as that.  When I look at my migraine pattern it fits the ups and down of testosterone every bit as much as it fits the ups and downs of oestrogen, and of course progesterone comes into the equation just before ovulation when my migraines appear and carries on until the end of the cycle just like the other two hormones.  So in fairness it could be any three of the hormones in isolation, or the balance between them which sets my migraines off.

Or it could be something else entirely more complex.  For example, oestrogen drives histamine and histamine has been linked to migraine disorder.  Or it could be progesterone, which adversely affects collagen and may cause more instability in the neck and spine and thereby cause migraine.  Like most things period-related no-one has a clue what’s really going on.

I read differing stores about Menopause and the effect no longer having periods has on migraine disorder, with some women saying it helped enormously and they now hardly ever have migraines and others saying it’s made no difference to their migraine frequency.  As my migraines are so clearly linked to my menstrual cycle there’s one thing for sure – Menopause is going to have some effect, it’s just whether that’s going to be for the better or the worse.  I guess only time will tell.

 

Dealing with a pain flare

As I’ve mentioned in my weekly round-up posts, for the past three weeks I’ve been having a humongous pain flare which came out of nowhere and could be caused by a number of things.  It’s body-wide.  My back hurts from my neck to my coccyx, my entire pelvis hurts, I have burning muscle pain in my thighs, burning pain in my knees, shooting nerve pains all the way down both legs to my toes (particularly in my calves), stiff ankles, burning elbows, a sore ribcage and burning wrists.  I have so many tender (like, fucking ouch!) trigger points that I can’t even count them.  I am not a happy chickie.

In respect of hEDS, physiotherapy is the main tool used to prevent pain and injury, but because I also have M.E. any kind of targeted exercise is out of the question.  Trust me when I say I tried for a whole year to do gentle physio exercises designed specifically for hEDS and failed miserably as it made my M.E. ten times worse.  In the end, even my physio had to admit defeat and told me to not to come back 😉  It’s really frustrating to know that if you could exercise and strengthen your ligaments and muscles it might help but I’m stuck with the situation so I thought I’d do a post on how I personally cope with a pain flare.

Most people’s first instinct is to reach for pain killing drugs, but of course due to my MCAD and the hissy fit my mast cells have at anything even remotely drug related that’s not an option open to me which sucks in every conceivable way.  So my only recourse is non-drug interventions.

1. Warm baths

Baths make my skin itch like crazy, but it’s worth scratching myself raw for the relief the soothing warm water gives.  I’ve even been known to run a bath at 2am and stay in the water til it’s gone cold.  Don’t underestimate the power of a bath.  You might like to add a handful of Epsom Salts to the water as it can also help, though sadly my mast cells don’t like that either.  I do wish they would fucking emigrate to Australia and leave me alone.

2. Topical pain relief

Despite not being able to take oral pain killing drugs I seem to have no issue with using topical pain relief, my favourite being Ibuleve speed relief max strength gel which is quite effective if you slather it on after a warm bath.  My burning knees and thighs, though, respond better to cooling gels and I personally quite like Deep Freeze. I can get both of these with my Tesco grocery delivery and can redeem my vouchers against them, which is great for the Ibuleve gel which is £9 per tube!  In the past I’ve also used Weleda Arnica massage balm and found it soothing.

3. Taping

When I was first taped by my physio I thought it was a complete bloody waste of time, but I know better now and it’s actually quite useful during a pain flare.  Kinesio tape mimics our skin, stretching as we move, but also helps to add strength to underlying connective tissue and allowing our own muscles and ligaments to relax.  I was given Levotape by my NHS physio, but Kinesio Tape Tex Gold is the popular choice if you’re going to buy some (both available on Amazon).  I have the 5cm wide beige tape and use a 25cm strip down each side of my spine on my lower back though you can tape any muscle or joint.  Of course, living on my own it’s a bit fiddly to apply and get straight so if you’re taping your back you’ll need the help of a good long mirror and there are areas I simply can’t do, like my upper back and shoulders.  The only drawback is no matter which tape I use it peels off easily – I just seem to have the kind of skin which nothing sticks to – and despite what you might read in reviews there’s nothing worse than bathing wearing kinesio tape and having the wet tape next to your skin (if it stays on that is, mine usually peels off in the tub).  It’s not cheap either at over £10 a roll but for me it’s worth the cost.  You can view various taping methods on Youtube if you just type in Levotape kinesiology tape, or there is some useful taping advice for EDS in these slides from Pradeep Chopra which also contains some excellent information on pain.

4. Bracing

Just lately I’ve been wearing just about every type of joint brace available!  During a flare your joints need extra stability to avoid further injury but braces also let your ligaments relax and heal.  I wrote a long blog post on splints and braces, which I’ve recently updated here.

5. Heat pads, cold packs

I luuurve my Dreamland electric heat pad and as I type this sitting up in bed it is keeping my spine snuggly warm.  I also like my cool pillow, especially when my menopausal feet are on fire!

6. TENS

Being allergic to pain killers I think I would have topped myself without my TENS machine over the years.  I have back pain every second of every day but I can take the edge off enough to still be active using my TENS.  I didn’t want an all singing all dancing one, so mine doesn’t do muscle stimulation or anything flash.  It’s a Med-Fit 3 which has dual channels meaning I can use two sets of pads at once.  I use the small 5cmx5cm square pads for stomach pain and the large 5cmx9cm rectangular pads on my back.   The only downside to the machine I use is that it doesn’t have a timer.  My last one did and it was great if I wanted to go to sleep with it on as it switched off after a set amount of time.  My TENS runs on a 9V battery and even though I use it for several hours at a time for days on end the battery often lasts months.

7. Complementary Treatments

Things like acupuncture, reflexology, massage and dry needling are all popular choices for pain relief amongst people with EDS, but sadly my mast cells hate them all (I was bedridden for 3 months after trying cranial osteopathy) so they’re not avenues I can personally pursue.  I still thought I’d include them, though, as I know many of you find them useful.

8. Resting, Stretching & Exercise

When we have injury or pain it’s a natural defence for our ligaments to tighten in order to protect the area and while this is important in the short term in the long run it can actually make pain worse.  Very gentle, with the emphasis on very, stretching is important just so long as you don’t go overboard which is easy to do when we are already so flexible but will only exacerbate the problem.  As I’ve aged stiffness has become a big issue for me and very gentle stretching has become increasingly important.

I admit to being torn on the exercise issue.  Bedrest seems to be viewed as the Devil in physio circles, but for me it’s vital to survival and even my pysio now agrees that I need more rest than most everyone else and that when I’ve injured a ligament it will take longer to heal if I don’t fully rest it.  So when I’m having a pain flare, like now, I do rest as much as possible for a good couple of weeks.  Having said all that, living on my own it’s not like I have the luxury of taking to my bed and never getting up again so obviously I’m still active making meals, doing laundry, taking care of Bertie and looking after my parents!

When the acute phase of a pain flare, or injury, is over I do try my best to walk every day, M.E. permitting.  I only usually manage about 20 minutes on the flat but at least it’s something and is as important for my heart, lungs and mental health as it is for my muscles and joints.  It’s frustrating to not be able to do more, but I have to live with the diseases I have and that’s all I can manage without making my M.E. worse.  Despite doing this short walk most days for nearly a decade I still can’t walk any further, which just goes to show that M.E. has nothing whatsoever to do with deconditioning and everything to do with the fact there is a fundamental problem with energy metabolism.

9. Distraction

Despite trying nearly all the above suggestions my current pain is not under control.  I’d go mad if I lay in bed focusing on how much I’m suffering, so distraction is the order of the day and I’ll do anything to take my mind off the pain.  Crocheting, renting my favourite box sets, editing my photos on my laptop, listening to talking books…….anything so long as my mind is active.  It helps more than you’d think and is one of the biggest tools in my pain armoury.

CONCLUSION

Living with a chronic pain condition is never easy and I’m not going to sugar coat the situation.  Pain is never something you get used to and I often think that the older you get, and the longer it’s gone on, the harder it is to deal with as your emotional resources weaken and you just get plain tired.  There are days I’m so fed up I curl up in a ball and have a good cry but let’s face it the pain is still going to be there when I’ve dried my eyes and wallowing in self pity is not going to make the pain go away.  It has to be managed as best you can and then ignored as much as possible, which for me is the only way I get through.   Healthy people who give advice on managing chronic pain need to live with it for a decade or two and then tell me how they’re coping!  It affects every waking second of the day and at night prevents you from sleeping when you’re desperate to be unconscious for a few hours break.

It’s probably unrealistic to expect to be totally free from pain when you’re living with something like hEDS but it is still possible to enjoy a fulfilling life.   Yes pain makes my photography challenging, especially as I struggle to bend or crouch, but if I manage my pain I can still enjoy my hobby.  I try to remain as independent as possible at home though if I were honest I’d employ more help if I could afford it, and I do still force myself to get out and do stuff even when doing so is going to temporarily make my pain worse.  It’s either live despite the pain or give up, become a hermit and wait to die and my life is too precious for that.

 

 

 

 

Weekly roundup

I’ve felt a little bit brighter this week and have managed three good nights sleep for which I am eternally grateful, but I’m still not able to physically do much due to my stupid back pain and am still more exhausted than usual.  The mast cell reactions I was having after meals also seem to have settled a bit which is a humongous relief, though I have woken this morning with my nose streaming which I’m assuming is hayfever being as though the Birch pollen season is now under way.

When you have complex medical conditions it’s virtually impossible to pinpoint what’s causing what.  My mast cells are currently over-reactive as I’m allergic to Birch pollen and I know my back is always more painful when my mast cells are having a hissy fit.  I’m also hugely peri-menopausal and my hormones are up and down like a Bridge’s nightie.  In animal studies, histamine has been found to be amplified by oestrogen so it’s no surprise that my mast cells are currently playing up.  Of course, I could also be having completely unrelated back problems due to my hEDS, who the hell knows?!

I must have been ovulating on Wednesday because my uterine pain was back with a vengeance and I spent most of the day unable to stand up straight, however it only lasted 24 hours and I was determined to go to Camera Club in the evening as it was our last digital image competition of the year.  I’m glad I did because my photos were placed a respectable 3rd and 2nd and my scores were enough to ensure I won the league so I’m now on course to receive two trophies at our annual dinner next month 🙂  In particular the judge loved my #metoo selfie, which made me happy because I love it too and the message the #metoo campaign promotes – it’s way past time for the silence relating to the sexual harassment and abuse of women to end.

My replacement plexi-glass also arrived so poor Bertie was drafted in as my model while I experiemented with taking fake rainy window photos.  He’ll do anything for dog biscuits 😀

Thursday I had some devastating news.  As regular readers will know I am battling my insurance company to extend my PHI (income protection) policy from 60 to the new retirement age of 65.  I’ve taken my case to the Financia Ombudsman who decided against me this week.  So I now have five days to put together an appeal.  Do I need this stress in my life when I already feel like shit?  No I do not.  There are times I think that Someone Up There hates me.

As I have been in so much pain recently I haven’t been able to do any cooking and my freezeer resembled Old Mother Hubbard’s very bare cupboard, so I bit the bullet on Friday morning and made several meals and smoothies.  Of course, that set my back pain off again and I’m lucky if I got three hours sleep that night.  FFS.

Some good news on the health front for a change.  I have severe GERD and was keeping it at bay with Famotidine (an H2 antihistamine) until January when my mast cells suddenly decided they’d had quite enough of those and rebelled.  I’d already become allergic to all the other H2 antihistamines on the market and my immune system doesn’t like PPIs either, so the only thing left to take was some Gavison liquid and pop Rennies like they were Smarties.  Needless to say I was in reflux hell for weeks at the start of the year and had an awful cough as the acid rose up into my lungs.  However, the good news is it’s settled down a bit!  I’ve started having my main meal at lunchtime and just a small snack at night and although I do still have reflux the cough has largely gone and the pain is bearable.  Yayyyyyy!  It does always get worse the week before my period, as progesterone makes connective tissue even more floppy than usual and the sphincter which holds my stomach contents in place doesn’t do its job properly, but I’m hoping once the menopause is over that might improve.  Watch this space.

The daughter of a friend who walks my dog is very bendy.  She’s now 13 and has started having mild back, knee and foot pain.  My friend knows all about my hEDS and we both agree her daughter is hypermobile, so she bit the bullet and rang her GP about it this week.  She was dreading it, knowing the battle I had to get diagnosed and the fact that my Doctor had never heard of the condition, so imagine both our surprise when before she even said what she thought the issue was her GP said “I think your daughter has hypermobility syndrome.  It’s not something I know much about, so I’m going to refer you to the muscular-skeletal specialist here at the health centre”.  Hurahhhh!  That the message about hypermobility is finally trickling through is brilliant and that this young girl will get the help she needs at an early age is fabulous.

It’s Easter Sunday today and my parents and I are going out for lunch.  It’ll be nice to have someone else do the cooking for a change and to not have to wash up afterwards!