Category Archives: Ehlers-Danlos Syndrome

Won’t someone stop this train

I’m having one of those days weeks where I’m feeling overwhelmed.  I’m beyond exhausted, hormonal, feeling extra poorly and am, quite frankly, just plain fed up.  It’s been coming on for several weeks and, despite knowing I’m doing too much, am stressed, not sleeping and my health is suffering, I’ve felt powerless to stop the train.

My stay-cation, which started Saturday morning, has felt like anything but a holiday.  Last week I had meant to get on top of my laundry and stock up my freezer with food so that I wouldn’t have to do any chores, but was so busy with my parents that didn’t happen, so I spent most of the first day of my vacation cooking and washing.  I also found out that a friend in the village had dropped down dead from a brain hemorrhage the day before at the age of 43, which was devastating.

Sunday I spent the entire day putting together a five page objection to the plans to build 10 houses on a field next to my home.  Planning objections have to be based on law and material facts about which I know nothing, so it literally took 7 hours of Googling and writing and re-writing and checking my facts to do the submission which had to be handed in by Wednesday.

Monday the Yale engineer was coming to my parents’ house about the lock, so I had to be there to see to him as my parents simply can’t cope.  While I was waiting for him to arrive I made them some mushroom soup to go in the freezer and did some paperwork.  I then went into town to have new keys cut for the new lock, then walked the dog, went to see my neighbour with the cancer’s daughter to check how she was doing and finally got home, on my knees with exhaustion, at 4pm.

Tuesday my parents, 2 neighbours, myself and the dog had arranged to go up the Lakes for lunch which sounds lovely but was hard work.  I’d woken that morning with a stonking bad head which never let up all day but I still had to get Mum out of the house and into the car, do all the driving, get Mum out of the car and into her wheelchair (in the pissing rain and howling gale courtesy of Storm Ophelia) and seated at the hotel, take her to the loo mid-meal (which meant mine went cold), get her back in the car, back into the house, her shoes off and her slippers on, a brew made for them both and all the while keeping an eye on my Dad and looking after the dog who then had to be walked (in the storm) on the way home.  That night I had a small seizure/mast cell reaction and knew that if something doesn’t change, and soon, my health could get seriously scary.

Weds I woke at 6am feeling so MEish I felt like I’d been run over by a bus.  There was a mix-up with my dog walkers (one of whom is also my cleaner) and both turned up at 9am.  So the actual dog walker took Bertie while the cleaner sayed on to clean the house, which was due to be done that afternoon.  Usually I spend an hour tidying up before she gets here but of course I wasn’t expecting her and the place looked like I’d been burgled, so instead of crawling back into bed which is what I needed to do I started to sort the house out (she can’t clean if there are 20 dirty dishes on the kitchen worktops, photos spread out on the lounge room carpet and no fresh sheets to put on the bed).  That night was camera club and there was a hand-in for our first print competition, so I also had three A3 size photos to print off and mount.  Then I walked the dog, did the Tesco shopping for myself and my parents,  had something to eat, got changed and before I knew it it was 6pm and time to leave for town.  I seriously felt like road kill and have absolutely no recollection of the drive home.

It’s now 5 days in to my hols and today is the first day I have been able to spend the morning in my pjs in bed resting (well, inbetween putting my groceries away which were delivered at 9am, making my lunch, taking the dog out, making my dinner and tidying up afterwards).

I feel hard done by and want to shout to the world DO YOU KNOW HOW HARD MY FUCKING LIFE IS????? not that anyone would care.

Being sick is a thankless task and no-one realizes how difficult our days are, not just physically but mentally and emotionally.  Being a Carer is also a thankless task and no-one realizes just how much stress and work is involved in looking after a sick relative and their home.  The two together just feels like too much some days.

I feel like I should be apologising for being miserable lately, then get angry at myself for thinking like that.  I’m bloody well entitled to feel however I feel and shouldn’t feel pressured into pretending to be perky and upbeat every second of every day.  Yes my life could be harder (and has been).  I could still be totally bedridden, I could be begging on the streets in India or living in war torn Syria, but just because I’m not doesn’t make my situation any easier to cope with — not just at the moment anyhow.  I honestly think if just one more thing goes wrong or gets added to my plate it will be the straw that breaks the camel’s back and I’ll just collapse in a heap on the kitchen floor sobbing snotty tears onto the lino.

I need a break.  A proper break.  Away from the dog, my home and my parents.  Somewhere pretty and tranquil and restful (not a hotel full of 100 other boisterous guests).  But I can’t afford one and even if I could who would have Bertie?  Wherever I was I’d still have to drive to get there, cook (as eating out every day for a fortnight would cause me all sorts of histamine nightmares) and I’d still have to do laundry as I don’t possess 14 pairs of undies or socks.  So even going away somewhere seems like hard work and not really worth the effort.  I feel alarmingly trapped in a situation from which it seems there is no rest or reprieve.

I know that if I get the chance to properly rest and my hormones settle down from their current warp 10 status I’ll get my umpf back, but today I just feel like a rat on a treadmill and my little legs are tired.

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Weekly roundup

I started a two week staycation yesterday, whoop whoop 🙂  I am so exhausted I have no idea how I’ve kept functioning and the thought of not thinking about anyone but myself for a while is heavenly.  This week, though, has been mental as I’ve tried to get on top of all the outstanding jobs so that I can take some time off with a clear conscience.

After 10 days of faffing about with Yale customer services over my parents’ front door lock and getting nowhere, I finally snapped and at 9pm Monday night I guessed the email address of the Managing Director of Yale UK and emailed him.  Imagine my shock when I received a reply less than an hour later, telling me he would personally see my issue was sorted the next day.  By 9.15am  Tuesday morning a Manager from Yale had rung me and offered to send an engineer to my parents home to fit a brand new lock with 5 key fobs free of charge (RRP £400).  Result 🙂

The 3rd intercom I bought for their front door also worked like a charm, so I’m hoping that’s their door entry issues finally resolved.

I also chased up the decorators who arrived on Wednesday and were finished by Friday.  The hall and stairs look great and, although they were expensive, they made a fantastic job.  I’m hoping that’s my parents sorted for a bit now (famous last words!).

I found out my 90 year old next door neighbour has lung cancer, so I’m guessing she will never return home from hospital 😦  At least the decision whether or not to contact social services over her care and living conditions is now out of my hands, which is a weight off my mind.  Her daughter, who lives 300 miles away, is currently staying in the house and has caught 4 mice in the kitchen, so at least she knows I wasn’t exaggerating when I said there was a rodent problem!

Our village discovered this week that plans have been put forward for a development of 10 detached 4 bedroom houses with double garages on a field only yards from my cottage which currently has a stunning view of the Pennine fells.  There is no identified housing need here, we have no facilities (shop, school, pub, post office, garage), the 2 local primary schools are full, ditto the dentists and doctors, and there is no public transport or employment beyond minimum wage.  There is only supposed to be housing built on green fields where there is an identified local housing need, so now we’re all busy putting together objections to the proposals.  There is a ridiculous scramble to build houses here in the UK and planning policy just seems to be ignored.  Rather than build inappropriate houses on land used for agriculture (what are we all going to eat when Brexit happens and food imports are restricted?!) I think the Government needs to look more at the sustainability of a tiddly little island with finite land mass and whose population is expanding at a ridiculous rate of knots (which was basically what Brexit was all about if you ask the average Joe in the street and nothing to do with racism or not wanting to trade with Europe).

At 10pm last night I settled down to go to sleep and when I turned off the light I saw pinpricks of flashing light in my vision which, within a few minutes, were a kaleidoscope of zigzag flashing coloured lines.  I was having an aura migraine, so despite being shattered I got up and had a snack as eating often helps to cut it short.  There was a period in my thirties when I had at least 2 aura migraines a month and they would frequently happen in the middle of the night waking me from sleep, then in my forties they almost totally disappeared to be replaced by common migraines, the kind with head pain so severe it feels like rats are gnawing on your brain.  My aura migraines only involve aura – no pain, nausea, nor anything else other than they leave me feeling spaced out and not quite with it.  I only get maybe two a year, there is no warning they are about to happen (unlike my common migraines which have a prodrome phase) and I have no idea what sets them off.  They’re not pleasant but I’d take them over the common migraines any day of the week, not least because they’re pain free and last under an hour unlike the common migraines which are excruciating and can last 4 days.

It was the first Camera club competition of the new season on Wednesday.  I am now in the advanced league with some seriously good photographers, so my hopes of winning anything this year were slim to none.  Imagine, then, my gobsmacked surprise when I came third with my ‘Sunday Worship’ picture and first with my ‘Mural’ 🙂  There are a couple of people in the club who are a bit jealous of my success and I know they were waiting for me to do badly so they could say “yes, it’s a different ball game when you’re with the big boys” and I admit I felt a bit smug that I’d robbed them of that opportunity 😉


If you don’t hear from me this week I’ll be lying in my bed reading a book and pretending I’m on a beach in the South of France.

 

 

 

HIT v MCAD

I often get asked on my blog what the difference is between Histamine Intolerance and Mast Cell Activation Syndrome, whether there is any link between the two and how to tell if you have one or the other (or like me, both!).   The answer is we know very little about Histamine Intolerance, and not a whole lot more about MCAS, and virtually zero about the two conditions in tandem.

I have no medical qualifications and am not an expert in either disease, so I can only write about my own experience and what I was told by the Consultant who diagnosed me (arguably the UK’s leading expert on both conditions).  Knowledge is an ever changing thing and what I know now may obviously change in the future as more is discovered about my little understood diseases.

I’m as certain as I can be that I was born with Mast Cell Disease.  I have photos of myself as a very young child where I am flushed bright red and my Mum tells me I was dermographic from a tiny baby.  She didn’t think much of it, however, as she was dermographic and got wheals and hives from tight clothing so she thought it was normal, just as she thought my “double jointedness” was normal and my velvety elastic skin was normal because she too was hypermobile and had stretchy skin.  As far as I’m concerned my MCAD is hereditary and genetic.

Photo of mast cell induced flushing

Flushing as a 3 year old child.

As most of you know, people with Ehlers-Danlos Syndrome are massively more at risk of MCAD than the healthy population but quite why is still a mystery.  There are several theories but they are just that – theories.  The truth is no-one knows.  We also don’t know if MCAD causes EDS, if EDS causes MCAD or if neither causes either and there is another mechanism at play altogether.

My mast cells are activated by all manner of things which the mast cells in a healthy person would rightfully ignore.  Heat, hot water ( very itchy!), cold, cold water (ouch and double ouch!), stress, hormones, some pollens, alcohol, some animals, emotions (particularly excitement), strong winds, exercise, just about all drugs and a host of other situations cause my mast cells to lose the plot, leading from mild problems like nausea or feeling fluey to full blown anaphylaxis and everything inbetween.  But until the age of 44 I could eat whatever I liked and I loved my food.  For the decade I was bedridden with severe M.E., and could do virtually nothing but stare at the ceiling all day, food was my biggest pleasure and I looked forward to mealtimes like an oasis in a burning desert.

Everything changed one day when I was 44 and suddenly started passing out every time I ate.  This was the start of what I discovered was Histamine Intolerance and for me it felt totally separate to my MCAD.  Very little is know about HIT but it’s thought to be caused by a lack of, or badly functioning, enzymes called Diamine Oxidase (DAO) and/or Histamine N-methyltransferase (HNMT).  My HIT was brought under control in about 6 months purely from changing to a low histamine diet, but it’s not ‘cured’.  I still have to maintain a low histamine diet otherwise my symptoms start to creep back and very soon I’m reacting again to everything I put in my mouth (histamine is part of the digestive process for everyone but my poorly enzymes can’t effectively deal with it, so it’s vital I keep my ingested histamine to a minimum).

So, for me, there are some vital differences between my MCAD and my HIT:

  • HIT is only related to what I eat or drink.  MCAD is related to my wider environment, both external (eg pollen) and internal (eg emotions).
  • HIT developed in middle age.  MCAD has been there since birth.
  • HIT causes anaphylaxis-type symptoms only (eg drop in blood pressure, palpitations, nausea, vomiting, fainting, flushing).  MCAD too causes anaphylaxis but also other symptoms (eg itching, dermographia, hives, swelling, sneezing, migraine, pain).
  • The symptoms from my HIT subside within 2 hours of eating.  The symptoms from a mast cell flare can last days, weeks even months – mast cell activation perpetuating mast cell activation and causing a neverending vicious circle.

As far as I know no link has been established between HIT and MCAD.  None of the major papers written by world experts on mast cell disease mention HIT as part of the puzzle which, if HIT were a major cause or perpetuating factor of mast cell degranulation, you would think they would.  I’m not saying the two aren’t connected because I have no clue, but for me they feel like very separate entities and my Consultant diagnoses them as two distinct and separate diseases.  That they both involve histamine is intriguing (though the mechanisms are vastly different), but we have no idea if people with MCAD have a higher incidence of HIT than the general population because no data on this exists.  It may just be coincidence if you have both diseases or it may not.  It may be that mast cells degranulate as part of HIT or it may not (I suspect not but that’s just based on my own experience).

When I’m having a mast cell flare, my HIT does appear to worsen.  However, I personally don’t think this proves a causal link.  What I suspect is happening is that my mast cells are producing excess histamine which my body is already struggling to cope with, so when I eat and even more histamine is produced from the act of digestion it causes overload and I get symptoms after eating that I wouldn’t get if my mast cells were behaving themselves.  So food/digestion isn’t causing mast cell degranulation, which is already happening from other causes, it’s just adding to my body’s histamine excess.  I may, however, be totally wrong.  No-one knows what’s happening yet and it’s not an area anyone is researching as far as I’m aware.

There are sites online which appear to contain authoritative and convincing information linking HIT and MCAD but I can find no research, and therefore facts, on the two conditions and none of the articles I’ve read contain links to research papers.  So as far as I’m concerned information linking the two diseases is based on nothing but speculation and guesswork and you all know how I feel about that 😉

So, that’s my take on HIT and MCAD but of course my experience may be different to yours.  According to my Consultant, you can have MCAD without HIT, you can have HIT without MCAD but you can also, of course, have both.

 

 

Weekly roundup

The first half of the week was dominated by The Curse.  My endo pain was excruciating, I couldn’t eat, couldn’t sleep, had a 3 day migraine and felt bloody awful.  Despite all that, Tuesday night I’d committed to help out at the beginner’s photography class but as I sat there my entire body was tingling and I felt scarily light-headed.  My iron levels, I’m sure, are low again due to me not eating as well as I could with everything that’s gone on with my Mum in the past couple of months.  So on Weds I decided to take 2 sachets of Spatone iron water instead of the usual 1 and within 24 hours I did feel much better 🙂

While I was at the photography class my friend noticed one of the rear tail lights wasn’t working on my car, so on Friday I had to go to Halfords to get it replaced, which cost me £20!   For 2 tiddly little bulbs – daylight bloody robbery.

My parents live in a first floor apartment.   They have an intercom on their front door so that they can see and speak to anyone who arrives at the house, then can open the door remotely with a wireless fob.   Only the day my Mum arrived out of hospital the bloody intercom stopped working *sigh*.  What was needed was a new system, because the handset for the intercom was in the hall and my Mum can now barely get out of her chair so she really needs a handset next to her in the lounge.  No problem, you can get wireless systems these days that I could fit myself…………..which worked everywhere in the house except where my Mum sits in the lounge which was a black hole of interference.  FFS.  I had to send the first one I tried back, and the second one I tried back, so this aft I’m picking up a third one which guarantees to be interference free.  Please God can this one just bloody work?

My Dad takes the fob to open the door with him when he goes out, as he now sometimes struggles to remember the numbers for the doorpad.   This, of course, leaves my Mum with no way of opening the front door if she’s in the house on her own.  No problem,  I thought, I’ll just get a second fob from Yale.  I then spent an hour trying to pair it to the front door without success.  I spent 25 minutes on hold trying to get through to the Yale helpdesk, only to be told they couldn’t help me and I needed to speak to the technical team……who were busy.  A ticket was raised and after I explained it was for my disabled Mother they said they’d get back to me urgently.  A week passed and I heard nothing.  I then shamed them on Facebook and 3 people rang me in the space of an hour!  Apparently since we got our door several years ago the wireless receiver for the fob has changed, so they sent out a new receiver.  Which still didn’t work with the new fob.  I then spent another hour on the phone to Yale who told me to reset everything.  Only then the door wouldn’t work at all.  You couldn’t get in or out and it didn’t lock.  The customer service chap then gave up, said he hadn’t a clue how to fix it and left me to it, saying he’d ring me back on Monday with a solution, leaving my disabled, vulnerable and elderly parents all weekend with a front door which wouldn’t lock or open!!!  I worked out that the reason nothing worked is that we’d faffed on for so long the batteries had died and all was well after new ones were put in (how come I could figure this out and the technical chap from Yale couldn’t?!), but I’m still none the wiser on how to get a 2nd fob to work with the old lock.

Why does every goddamn thing end up being so stressful and exhausting?!  The reviews for the wireless intercom on Amazon were excellent – everyone else just plugged it in and it worked perfectly.  Not for me though, oh no, that would be far too easy :-/  Y’know, when the people around me helpfully suggest I “get more help” in dealing with my parents who the fuck do they think I’m going to employ to do stuff like this?  Or to trail into town because my Mum needs new slippers, only her feet are swollen so she doesn’t know if she needs a size 4 or a size 5, so I have to buy both, take them home, try them on her, then go back into town to return the pair that didn’t fit.  Or the fact that my Dad can’t even cope with deleting photos off his camera so that he can take the memory stick up to the Kodak shop to get printed off, so needed me to help.  Or the decorators who promised to paint my parents’ hall and stairs by the end of September but haven’t yet turned up and needed chasing.  They’re now coming on Weds this week, so muggings here has to go today and take all the pictures down, the shelf off the wall above the radiator and my Mum wants rid of the old Intercom and wires which involves me crawling about in the loft and just hoping I don’t get electrocuted.  I do wish the do-gooders, who have absolutely no clue what’s involved in looking after elderly parents, would shut the fuck up about me needing more help like it’s an achievable solution when it’s nothing of the kind.

Lovely people keep buying me stuff for birthdays and Christmas, only I’m not a ‘stuff’ kind’ve girl and have zero need for most of it.  So I now have several boxes of irrelevant, but brand new and beautiful, shite sitting in the corner of my bedroom.  I had planned on doing a couple of car boots in the summer to get rid,  only a combination of the weather, my own health and my Mum’s health put the kibosh on it.  However there was a table top sale in the next village on Saturday so I loaded up the car, unloaded it the other end, reloaded it 4 hours later and carried it all back into my bedroom, making a lousy £19 in the process.  This morning I’ve woken up with my back, elbows, wrists and knees on fire from all the lifting and I’m not entirely sure the pain is worth the piddling amount of cash I raised 😉

Apologies for such a grumpy roundup, but the truth is I feel grumpy (I think I’m still hormonal).  And tired.  And a bit fed up.  This week I’ve had zero time for myself or to do anything fun and I’m a girl who needs a bit of fun to keep my disposition happy.  I promise to try harder this week 🙂

 

Weekly Roundup

My Mum’s zen hasn’t lasted long and she’s back to henpecking my Dad and telling everyone what they’re doing wrong.  I preferred the laid back version, even if it freaked me out 😉

She can now get to the front door with her zimmer but really struggles to get over the front door step especially as the vestibule is really narrow and there isn’t room for someone to steady her, so I spent Monday fitting a grab rail so that she has something to hold on to while she navigates getting her feet over the stoop.  I naively thought it would be the job of the OT from the rehab team to sort stuff like that out but no such luck.

By Wednesday Mum was looking really rough so I rang the surgery to request a call from the duty doctor, which  took 2 hours. She prescribed some tablets which didn’t help and by the next day Mum was no better so I then spent 4 hours waiting for the Doctor to visit.   Her meds were adjusted and she seems to be picking up again.  I’m never grateful I’m chronically ill, but there are times I’m grateful I’m not working full time because Lord knows what would happen to my parents if I were and couldn’t spend the time with them during the day that I do.

Her own GP had promised last week to come back on Monday to monitor her mental health following her alcohol withdrawal but has she put in an appearance?  That would be a big fat no.  Mental health in the elderly is simply ignored, so it’s no bloody wonder we have an epidemic of alcoholism amongst our old folk.

Just when I thought my days of trailing 60 miles to the city to visit someone in hospital were over my 90 year old next door neighbour was admitted this week.  She broke her arm 6 weeks ago so that’s in plaster and this week when she went to get out of her chair she found she couldn’t stand or walk.  She broke her hip 2 years ago, so the initial thought was that it had fractured again, but scans show no problem so they’re still a bit flummoxed as to what the issue is.  Her son lives in the village but can barely be arsed to bother with her and her daughter lives 400 miles away in Southampton.  I’m a keyholder, visit once a week and do what I can for her but to be fair I’m sick myself and already have a lot on my plate looking after my own parents.  Everyone tells me she’s not my problem and they’re right, however someone has to care for her and being as though no-one else is stepping up to the plate that person is me.  She was admitted to hospital last Saturday.  I went to see her on Friday as that was the first chance I had due to taking care of my Mum and I was the first visitor she had had, despite the fact her son and all but one of her neighbours are retired and do bugger all all day.  They’re a disgrace.

She has a cleaner once a week, but I’ve no idea what it is exactly she cleans because my neighbour lives in squalor.  At the start of the summer I took it upon myself to blitz her kitchen, despite the fact I pay somone to clean my own house because I find it so exhausting and painful.  I simply couldn’t bare the thought, though, of her living in that kind of filth.  This week I had to go into the house to collect toiletries, slippers etc. to take through to the hospital for her and while I was there tidied and cleaned the kitchen which was, once again, a shit tip.  She can no longer reach the top cupboards, so food is permanently left on the counters.  There were opened packets of cereal, bread, biscuits, crisps, margarine and jam and surrounding those were tiny little brown pellets.  Yep, she unsurprising has a mouse infestation and I scooped 2 handfuls of poop off just one kitchen counter.  Mice carry any number of diseases and to think they may have been crawling about in her cereal packets which she has then eaten doesn’t bear thinking about.

I’m in touch with her daughter down south so told her what I’d found.  “Oh, yeah” she replied, “when we were up last month I moved the chair in the lounge to hoover and found mouse droppings so I know she has them”.  WT-actual-F?!  So she knew her Mum’s home was infested by mice and just buggered back off to Southampton without doing anything about the situation.  Not only that, but if her cleaner had ever stepped foot in the kitchen she would have seen the droppings.  Plus she has carers who go in 3 times a day and who make her lunch.  How can you make food but not wipe the kitchen counter afterwards?! People never cease to amaze me and my very old, frail, vulnerable neighbour is being let down on a spectacular level.  There is no way on earth she should be allowed to return home and should be in residential care.

So my week has been dominated by old, sick people.  Not that I mind, but it is tiring and I was exhausted enough to start with.  We have several healthy, active neighbours who could be helping out with my 90 year old but do they give a toss?  Nope.  Selfish fuckers – I hope when they’re old they all get sick and no-one cares for them.

My hormones are still playing silly buggers.  This month I ovulated really early then had period pain so bad on day 18 I literally couldn’t stand upright, so I was convinced I was going to have a very short cycle this month.  But I’m now on day 27 and no sign of Aunt Flo.  I don’t know whether I’m coming or going.

Unsurprisingly my histamine level is really high and consequently I’m not sleeping, which isn’t helping my energy levels one iota.  Add to that vertigo attacks, migraines, itchy hives and all sorts of pain issues and I’m a bit fed up, plus it’s not looking like my much needed 2 week stay-cation is going to happen any time soon.

There are times I wish something nice would happen.  Something wonderful to lift my spirits and which would feel like a reward for all the drudgery.  Like a multi-million pound lotto win, or meeting the man of my dreams in the Quorn aisle of the supermarket.  Or even just 8 hours kip or a lie in past 6am.  I don’t feel it’s asking too much 😉

 

 

Mobility Aids

When I was almost totally bedridden with M.E. going out of the house was torture.  Just being upright made me feel like I was dying and, once outside, the light, sounds and smells of the outside world were an actual assault on my very poorly brain.   The energy needed simply to get dressed had almost seen me off, leaving me with no reserves, so when I absolutely had to leave the house I used a wheelchair.

The experience had both positives and negatives.  Positive in the fact that, without the wheelchair, I was completely housebound but negative in the fact that I had no independence and was at the mercy of whoever was pushing me.  They often went at a pace I wasn’t comfortable with and stopped to chat to people they knew but I didn’t.  On the very rare occasions I went to the shops I couldn’t see any item on a shelf higher than waist height (a particular problem in supermarkets) and found being in a wheelchair a very isolating experience as it’s almost impossible to chat to whoever you’re with.  The reaction of the public was to be expected I guess.  Many people talked to my Carer, treating me like I was invisible, and the rest talked to me like I was mentally deficient.  Even my Mum, who was usually the pusher, at times treated me like a child.  I remember being in B&Q once and we were struggling to find an item so she said to me in a very loud voice “ask the nice gentleman over there Jak” like I was five and being encouraged to speak to strangers.  I could have throttled her.

My GP, otherwise supportive, didn’t want me using a wheelchair.  I was capable of walking so in her eyes I should just crack on and do it.  She, of course, had no idea the effects walking had on me or the hours, sometimes days if not weeks, afterwards where I lay on my bed feeling like I’d had 5 rounds of chemotherapy – puking, shaking, unable to think or speak and so weak I could barely breathe or open my eyelids.  She warned me that by using a wheelchair to get around I’d “go off my legs entirely”, not understanding that I was virtually “off my legs entirely” to start with hence the need for the mobility aid!  She wasn’t the one who had to live with my disease, or the consequences of walking around, I was so I promptly ignored her.

I have to admit using a wheelchair was a necessary evil but not an experience I want to repeat any time soon, so when I started to see some improvement in my M.E. I bought myself a small mobility scooter.  Now I could go out on my own, whenever I liked, at a pace I liked and to wherever I liked and it was brilliant.  It was obvious to the public I was mentally competent so they talked to me like a regular grown up and I found that other scooter users waved or stopped for a chat, albeit most of them were over 70.  The only negative was when I got off my scooter, for example if a shop wasn’t scooter accessible or if I needed to use the public toilets.  If you use mobility aids many people expect you to be paralysed or totally unable to walk, so I did get some peculiar looks and snidey comments about “miraculous recoveries” to which I’d raise an eyebrow and ask politely “is there a problem?”  Once confronted most people backed down and scuttled off.

Portable scooter which goes in the boot of the car (if you have someone to lift it in for you!)

My cousin once asked me if I was embarrassed at having to use a scooter, a question which surprised me.  For a start, without the scooter I couldn’t leave the house so to me it was absolutely fabulous.  And for another, what was it I was supposed to be ashamed about, exactly?  I hadn’t made myself sick.  Hadn’t robbed anyone.  Wasn’t a druggie or a dropout.  Hadn’t committed murder.  My body was poorly and didn’t function as well as it might – I’m still flummoxed as to where the shame is in that.  My view is that I’m lucky enough to live in a country where mobility aids are, for those who can afford them, accessible and I’m grateful for the fact.  I’m sure there are a lot of disabled people living in Africa who would kill to use a mobility scooter to get around.

Now my M.E. is at a moderate, rather than severe, level I do walk whenever I feel well enough.  I kind’ve understand where my GP was coming from and agree that, if it doesn’t make your condition worse, you should try to walk if you can.  It keeps muscles strong, heart and lungs healthy and helps control weight, alongside all the emotional and psychological benefits.  I am so grateful there are now days I can walk for 10 or 15 minutes down by the river with Bertie and I love and appreciate every second.  However, there are also days I am too exhausted, in too much pain from my Ehlers-Danlos, or simply feel too ill to walk, so still regularly use my mobility scooter and am grateful to do so.

Having EDS means I live with chronic pain and frequent injuries.  My back and hips are particularly badly affected and I have issues with my sacroiliac (SI) joint.  When I stand and walk the pressure on my SI joint, lower back and hips can be incredibly painful and there are times I need to take the pressure off the lower half of my body by using crutches.  I fucking hate my crutches.  The NHS ones were useless, heavy and hurt my arms, wrists, elbows and shoulders, so I bought some Smart Crutches which, if you have to use crutches, are as good as it gets.  But they’re still a pain in the arse.  Trying to manoeuvre steps and stairs on crutches is a mare and, if you use them around the house, they just get in the goddamn way.  What the hell do you do with your crutches when you’re making a brew, for example, or a meal.  Doing the washing up or having a pee?  They just constantly get in the road and, having leaned them against the kitchen counter while I put the kettle on, inevitably end up falling on the floor.  I should probably use my crutches more than I do but unless I’m absolutely desperate I can’t stand the hassle.  If I had the money, and my house was suitable (which it’s not) I’d much rather use an electric wheelchair on my bad days than crutches, but at the mo it’s just not an option.

I put off using mobility aids for years because of a lack of knowledge about my diseases, how to manage pain and effectively conserve energy.  I thought using disability equipment was somehow giving in when in reality I was just punishing myself unnecessarily.  These days I’m much better at knowing my energy limitations, recognizing if I’m having a particularly bad day or am injured, and altering my mobility needs to suit.  I’m grateful I have access to aids which help my daily life and would actually use more, not less, if I could afford to.

All terrain Class 3 road scooter.

Weekly roundup

Whoooooooo.  This is the sound of me exhaling, something I haven’t done for a good 2 months.  Finally I’ve been able to have a couple of days at home and actually slob about in my jim jams, well until it’s time to take the furry child out for his afternoon jollies when it’s advisable to put some clothes on – I’d be a Smorgasboard for mozzies, ticks and midges if I sauntered through the woods half naked.

Physically my Mum is coping OK, but it’s her behaviour which is astounding me.  She is no longer drunk and we are having actual conversations in which she is lucid, rational and just plain normal.  And she’s now ringing me too, which she hasn’t done for 4 years as she was too busy getting legless.  I don’t have to think about what time of day it is, because I can speak to her at 7pm at night and she’s just the same as she was at 10am.  When she was drinking she was so smashed she made no sense by evening.  On a purely selfish level it’s wonderful.

But more than that she’s really calm.  My Mum’s always been a feisty person and while she’s been drinking she’s been a mare.  She constantly got frustrated and irritated, particularly with my Dad, and was a real bully at times.  But since coming out of hospital she is weirdly chilled.  She is not snappy and constantly losing her cool, which means visiting isn’t the stressful experience it used to be.

I arranged for her GP to come and check her over and had a quiet word with her about the situation.  My fear is that now Mum is out of hospital, she is not being fussed over by the nurses, she doesn’t have the other patients to chat to, she’s not drinking and is discovering the full extend of her physical limitations and isolation that she will nose dive into severe depression.  She drank because she was unhappy and lonely and that hasn’t gone anywhere.  So the GP is coming back this week to monitor her mental health.  I’m not buying this new, zen persona for a second, though I’m enjoying it while it’s on offer.

My hormones have been rampant this week and I had a very painful ovulation.  My egg release is getting more and more excruciating, I’m assuming because of all the endo-related adhesions on my ovaries,  and for a couple of days I literally couldn’t stand up straight.  I also had a niggly migraine for 4 days which kind’ve spoiled my R&R and my emotions were up and down like a bride’s nightie – one minute tearful, the next wanting to tear someone’s head off.  S’not nice.

Wednesday night was my Camera Club and months ago I’d been roped into doing a demonstration on Photoshop.  I woke that morning with a migraine which got worse as the day progressed, but thankfully it wasn’t bad enough to stop me driving so I soldiered on.  All was fine until mid-way through the workshop when my brain suddenly felt like it had become loose and had gone crashing into the side of my skull.  I seriously thought I was having a stroke.  For a few minutes all thought processes ceased and I literally couldn’t speak, which was proper scary.  Although it settled down, for the next half an hour trying to get my thoughts and words together was tricky and my blood sugar plummeted until my hands were shaking.  These weird vertigo-like episodes are becoming more frequent and I’m not sure if it’s to do with the peri-menopause or is linked to my migraine (I’m thinking more hormones because they often happen without a headache).  I do wish they’d jog on cos they’re starting to freak me out.

Being as though I had a few hours to myself this week I was able to take some photos, which I haven’t had time for in ages.  We have a competition coming up with the theme of ‘Water’, so I decided to try and photograph ‘rain’ which involved being outside in the dark in a flimsy dress and standing under a freezing cold hosepipe when it was only 10C outside.   I won’t be doing that again in a hurry 😉


I also thought I’d try some hi-key photos with the last of the summer flowers from my garden.  These were much more pleasant to do, if a bit of a faff.


On balance it’s not been a bad week all things considered, though my mast cells are certainly on high alert from all the stress and over-exertion of the past few weeks.  I am seriously not sleeping, have nightly anxiety nightmares which leave me drenched in sweat and am getting up in the night for a pee, a sure sign my histamine is rampant.  My back and joints are also painful, which is probably a combination of my hormones, mast cells and the autumnal weather, and my appetite has gone through the roof (definitely menopause related!).  On the plus side I’m starting to feel more like a human being than road kill and at least have clean socks and undies now I’ve had chance to do some laundry 🙂