Category Archives: Myalgic Encephalomyelitis

Weekly roundup

I get the feeling that someone ‘up there’ doesn’t like me.  I know people who sail through life, whereas if something can go wrong in mine it will.  I am due to see Dr Sargur at Sheffield on 27th June.  He is one of only a handful of NHS Consultants in the country now treating MCAS patients and has a good reputation on forums. The appointment is for 11am and it’s a 3 hour train journey, so I decided to go the day before and have booked a hotel room and my return train tickets.  Then this week, I receive a letter saying that “now the consultant has seen your GP’s letter he has decided it’s an inappropriate referral and has cancelled your appointment”.  WTF?!  I sat on the stairs and cried.  I have had no treatment or advice on my MCAS since I was diagnosed 6 years ago and am currently having some symptoms which are worrying me (I still have the swellings under my armpit and in my elbow).  I’ve also lost £100 on my hotel room (a huge amount of money to me) as it was non-refundable and have no clue if I’ll get a refund on my train fare.  I now need to speak to my GP as to where I go from here, but in the meantime I’m going to write to the Consultant and explain my situation.  I thought we had a legal right to be treated by any hospital and consultant we choose, particularly when there are zero specialists locally.  People who live in rural areas are completely discriminated against when it comes to health-care and it is not on.

I have had to fight for every ounce of care I’ve ever received and I am exhausted.  More than that, I feel beaten.  On top of  the18 months I’ve just spent fighting for help for my Dad and getting nowhere I just don’t know if I have any fight left in me to tackle the situation.

I was supposed to hear from D&G about my fridge/freezer insurance complaint by last Friday but of course have heard diddly squat.  They will be deliberately taking their time in the hopes I will cave and buy a new fridge so they won’t have to fork out for one.  The fuckers!  I’m giving them 5 more days to replace my appliance then am opening a complaint with the Ombudsman, and will also be writing to the FCA and informing them of the tactics used.

It was my Mum’s 79th birthday this week.  She had her ears pierced 30 years ago but for some reason along the way had stopped wearing earings and the holes had closed up, so she asked for them to be re-done for her present.  My folks, Bertie and I went out for lunch and actually all really enjoyed it which makes a change – the fact my Mum decided not to drink probably had something to do with it.

On Friday I went to my elderly friends’ house to fill in forms for Attendance Allowance, which is a welfare benefit payable if you need help with daily living and are over 65.  No-one tells you about your entitlement to AA and my friend had never heard of it despite being regularly seen by his GP, physios, OTs and the falls team.  It’s a disgrace that elderly people aren’t told about the benefits they can claim, despite paying into them all their working lives.  Even when you do know about it the 31 page form is so daunting it puts most people off and if I hadn’t have filled it in for him my friend would just have binned his application.

I’m mid-cycle and have spent the entire weekend with a migraine, which also makes me nauseous and generally bleugh.  I seem to be getting them more than usual this year which I’m putting down to my fluctuating peri-menopausal hormones.  Please God just make it stop.   The weather is also atrocious for June – yesterday it was only 11C and it has rained most of the week.  I am ready for summer, fed up of being stuck in the house and just wish the sun would put in an appearance.

Well, that was a totally whingy post wasn’t it?!  I wish I had something positive to end on but I don’t 😉  This week has felt like an uphill struggle and after 25 years of uphill struggle I’m pretty much knackered.  I did try hard to win the £120 million euro jackpot on Friday night but failed miserably.  All I can do is trudge on and hope that this week is better.

 

 

 

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Weekly roundup

Time has little meaning when you’re chronically ill and each day is the same.  Monday was a bank holiday but that didn’t even register on my radar because it was just like any other Monday, apart from extra traffic jams as tourists descended on the Lake District in their thousands for the half term holiday.  Pity the weather’s been rubbish for them!

Tuesday I had lunch with my bestie.  I was desperate to see her just to gain some perspective and have a bit of different gossip – other than her, the only people I spend any time with are over the age of 75!  We should all have someone with whom we can just be ourselves, has the same sense of humour and who gets us – my bestie is that for me 🙂

I am still being tortured for painting my shed doors the other week.  My neck is really sore and Wednesday morning I woke and was unable to move my right arm.  I’d obviously dislocated something in my upper spine in my sleep and was in a fair amount of pain, so I stuck my TENS machine on it and tried to just crack on.  Thursday morning I woke and it was totally fine!  That still amazes me – that you can be perfectly alright, go to bed and wake up unable to move some body part or other, and conversely go to bed in agony and wake up ticketyboo!  If you told that to any Doctor they simply wouldn’t believe you.

Thursday I made my tenth 180 mile round trip of the year to the RVI in Newcastle with my Dad.  The spinal surgeon had asked to see him and we both thought he would finally get his decompression surgery which had been postponed from last December, but no.  After waiting 45 minutes as the surgeon was running late we were told he won’t do Dad’s surgery until he’s seen the orthopeds about his hips.  Could he not have fucking told us that on the phone?!!  We were in and out in 10 minutes, then faced road works and diversions in the middle of rush hour in a city neither of us know – it’s was super stressful, esp when my sat nav decided it wasn’t going to work.  Why on earth, after seeing Doctor after Doctor since November 2017 have they just decided to scan his pelvis and realized he needs a hip replacement?  Should that not have been done 18 months ago?  We’re all starting to despair.

I have a tall fridge/freezer and the fridge has started to get icy and all my vegetables are freezing solid.  I rang the repair company I usually use, only to be told they don’t service Hotpoint as Hotpoint make their appliances so they can only be repaired by Hotpoint.  So I rang Hotpoint and the cheapest way I could get an engineer out was to take out a £120 insurance – what a fucking scam.  The guy turned up on 9th May and found ice the size of a berg had blocked the drain in the back of my freezer, so removed that and declared it fixed.  Only it wasn’t.  So three weeks later I had to request another visit and this time was told the sensor had gone and it wasn’t fixable.  Under the terms of my new insurance, if on the 2nd visit it is deemed irreparable I am given a replacement fridge/freezer, so that’s what the engineer requested.  Only I get a call from Hotpoint saying the two engineer visits have to be 30 days apart otherwise my insurance isn’t valid.  There is no mention of that in the Terms & Conditions of my insurance, however, not even in the small print!  So I’ve now made a formal complaint to Domestic & General (the insurers) for not honouring my insurance.  I know I absolutely am covered and they’re just trying it on, but the complaint can take up to two months to sort out and D&G are quite well aware that you can’t go two months without a fridge – they bank on you buying a new one yourself so they don’t have to!  This bloody country has gone to the dogs and no-one is stopping these rogues from ripping us all off.

I saw some rubber Pixie ears on Amazon recently and just knew they would come in handy for something!  I haven’t dressed up in a while and, I have to be honest, I’ve missed it so I decided to amend my recent Cockchafer picture to include a pixie passenger – the resulting image I’m calling The Hitchhiker 😀

 

Weekly roundup

It’s been a non-descript week, full of the mundane.  I know that’s how most people’s lives are most of the time but that’s not how I intend to live.  Life is so short and so precious it needs to be more than just watching the days go by – I owe that not only to myself but to all those who are too ill to have a life.

Tuesday I helped my elderly, disabled friend stage his house for sale.  It’s a stunning property with 5 bedrooms, 4 reception rooms (one of which is hidden behind a panel in the wall!), oak beams in all the ceilings and with stunning views of the mountains, however he’s now on his own and can barely walk so it’s way too big for him and he’s hoping to get a smaller bungalow in town.

The rest of the week I’ve taken advantage of the dry weather to tackle my garden, which has been neglected while I did the car port.  It’s the size of a postage stamp and has no grass, but as my ability to bend is so limited I still find it hard work to look after despite the fact I absolutely love gardening.  I’ve pruned and fed and tidied, though, and it’s now looking pretty as my little patch of wild flowers are starting to emerge.  The Solanum Glasnevin over my front door is looking particularly splendid this year.  I’m not sure how long it will take my knees and back to forgive me, however, and I’m currently walking like a constipated duck.

Front door

The saga with my Dad’s health continues.  He has spinal stenosis (narrowing of his spinal canal) and was due to have surgery at the start of December last year, however the Surgeon postponed the op when he discovered my Dad’s severe neuropathy.  Despite trying hard, the Neurologist can’t find any reason for the neuropathy so it’s looking like his surgery can now take place and we’re back at the RVI in Newcastle on Thursday to discuss.

Have I mentioned I’m getting weird choking sensations?  It’s been going on for about a year now and is really bizarre.  I feel like I can smell warm smoke, which gets in the back of my nose and throat and makes it hard to breathe.  Someone else brought it up on an MCAD forum recently so it looks like it’s a mast cell thing and I’ll mention it to the consultant when I see him next month.

A week on from painting the shed doors I still can’t turn my head.  I think I’ve pulled/torn my levator scapulae muscle which is pretty sore.  Because I am so motivated to do stuff I often forget I am chronically ill and it’s only after I’ve spent months in pain that I think “maybe I shouldn’t have done that” 😉  I’ve also had my period and spent 3 days in both migraine and endometriosis hell.

The highlight of my week was being awarded my second photographic distinction, which has been 2 years in the making.  My first, the DPAGB, is awarded by the British photography body and was achieved by submitting a selection of images which were judged by a panel.   This second, AFIAP, is awarded by the international photography body and has been achieved due to my success in international Salons.  So I can now put DPAGB AFIAP after my name – how terribly posh!  The “A” in AFIAP stands for artiste, but my Dad says putting the word P*** in front of it would suit me better – cheeky mare 😀

Another M.E. Death

The M.E. community were shocked and saddened to hear of the death of M.E. warrior Jennifer Chittick yesterday (24th May 2019).  Jenni had endured severe M.E. for a decade, was bedridden and reliant on her parents for care.  We don’t know the cause of death, but to lose your life aged just 31 is absolutely tragic and my heart goes out to her family and friends.

Just a day before she died Jenni had been the subject of an excellent article in the Daily Mail newspaper on the abuse and neglect faced by M.E. patients.   Her story echoed mine and her tragedy could so very easily have been mine.

I became severely affected by M.E. aged 26.  I lived alone and was told by my GP “we don’t have enough home care workers for people with cancer so you stand no chance” and I was just left to look after myself, despite the fact I once spent 4 months barely able to open my eyelids.  For 6 years I crawled to the loo on my hands and knees and never cleaned my teeth.  My Mum made a meal for me every day, after working full time, and my Dad drove across town with it in the car on a tray for me – it’s the only nutrition I had other than cereal and the odd smoothie.

At one stage I was so ill I simply couldn’t manage any longer at home alone.  My GP arranged for me to be admitted for respite care to the neurological rehab wing of my local hospital.  There were no doctors there and I was mostly looked after by physios – this was a ‘rehab’ ward after all!  I didn’t know then that I had Ehlers-Danlos syndrome, and I was told it was brilliant I was so flexible!  I had huge problems eating solid foods, not least due to oesophageal spasms (now known to be due to mast cell disease) and gastroparesis (now known to be due to hEDS), so the psychiatrist was sent for and she told me I had anorexia, despite the fact I was starving, wanted to eat but was just too ill to.  I had a seizure in the presence of a nurse one day and she didn’t touch me or send for a doctor …………I’m sure if I looked at my notes it would have some psychological explanation, even though I couldn’t move my entire right side for a whole day afterwards.  I was given no help with bathing, despite the fact it was one of the things I struggled the most with.   In the end, after 3 weeks of zero help and disbelief, and being looked after by a girl who used to bully me at school, I discharged myself and went back to living at home alone.  It was pure luck I survived the next decade, both physically and mentally.

My experience happened back in the late 1990s/early 2000s.  It makes me furious that the situation hasn’t improved in the intervening two decades.  Just because a cause hasn’t yet been found for the disease shouldn’t mean we are treated as subhuman or denied basic care and compassion.  The denial of M.E. as a physical disease, and the neglect and abuse of patients, will eventually be uncovered as one of the biggest scandals of modern times.

A new perspective

Yesterday I read the most fascinating post by Jen Brea, author of the wonderful film Unrest.  For those that don’t know, Jen developed M.E. after a meningeal-type viral infection 8 years ago and has been severely affected ever since.  She also has dysautonomia/POTS (as many people with M.E. do), Mast Cell Activation Disorder (as many people with M.E. do) and has all the hallmark symptoms of hypermobile Ehlers-Danlos Syndrome only without the hypermobility (we hear this more and more, ie that people can appear to have connective tissue disease without having bendy joints!).

After being very ill for several years, Jen started not breathing when she lay down.  To cut a long story short, she turned out to have cervical cranial instability (CCI) and tethered cord syndrome, both of which are among several neurological and spinal problems seen in hEDS.  Jen admits she’s lucky enough to have access to one of a handful of specialists in the world who treats these diseases, and has the resources to fund surgery which she successfully had a few months ago.  She writes about the remarkable transformation the surgery has had on her health and in particular that she is now in remission from M.E.  That’s right, in remission from M.E. so severe she has been largely bedridden for 8 years!  She also says her POTS has vanished and her MCAD is getting better all the time.

Yet she had classic M.E.  No symptoms whatsoever before coming down with the meningeal-type viral infection back in 2011.  So how on earth can a viral infection, which is the precipitating factor in most cases of M.E., cause mechanical issues like CCI and tethered cord?  I’m no expert, but the obvious link is that the viral infection affects mast cells (which I’ve been saying for eons), which then weakens/affects connective tissue (as mast cells live in connective tissue) and this weakened connective tissue then doesn’t hold the spine in place properly.   Of course, weakened connective tissue can also affect veins (leading to POTS) and all the other symptoms we see in traditional hEDS including things like gastroparesis and chronic pain.  Having our spinal cord compressed would also account for brain fog, pins and needles, muscle twitching, vertigo and many of the other symptoms found in M.E.

So it looks like there may be two issues going on.  There are people, like myself, who were born with hEDS.  This may pre-dispose us to developing M.E. due to the issues having faulty connective tissue has on our mast cells, which are at some stage in our lives triggered by a viral infection.

There are also people who don’t have hEDS, but who develop a viral infection which affects mast cells, which in turn affects connective tissue.

So, one is the chicken and one is the egg but the end result is the same.

I have no doubt I have cervical cranial instability.  For a start my head feels like a bowling ball sat on top of my neck and is much of the reason I have to spend 17 hours of every day in bed – I simply can’t hold my head up all day.  Plus, if I’m sat upright and til my head backwards even a little way the room starts to spin, I get severe buzzy pins and needles throughout my entire nervous system, I develop palpitations, my brain feels like it’s cramping and just feel really, really, weird.  I have also suffered from lower back pain since I was 11 years old, which wasn’t cured following surgery for rare congenital spinal stenosis.  I can only assume I also have tethered cord or some other hEDS related spinal issue.  Not that I’m going to attempt surgery for either, as I don’t have the money or support, and can’t tolerate the drugs or analgesics used in surgery even if I did.

It’s all food for thought.  I’ve long suspected faulty mast cells to be at the heart of everything so, rather than going through the drastic step of surgery for CCI and other spinal issues, surely if we can inhibit mast cells that would stop the connective tissue from being weakened in the first place?  At least for people not born with hEDS.

For those who have genetically weakened connective tissue the issue is more complex, but even so if we can inhibit mast cells would that not theoretically make our connective tissue less unstable?

I don’t know if any of my thoughts on the mechanisms involved in M.E. are on the money – I’m so dizzy and have such severe brain fog today it’s a wonder I’m functioning at all 😉  I’m sure my less brain-fogged and more intelligent readers will share their own theories.

I’m so thrilled for Jen though.  She’s been to hell and back, yet despite that managed to make the best film I’ve ever seen on M.E. and promote it world wide.  She deserves to be well and I hope her recovery goes from strength to strength.

Weekly roundup

I’ve had a much better week emotionally after making the decision to stop the stuff going on at my Camera Club from affecting me.  I’ve started to eat properly again and because of that feel physically stronger.  My Federation is still looking into my complaint so I’ll just have to wait to hear, though it is taking way longer than it should.

The sun finally came out this week and it’s actually felt like Spring.  I always physically do so much better in sunny weather for some reason, so long as it’s not boiling hot – I have loads more energy and my pain levels are reduced, so it feels like a mini break from being sick.

Monday I decided to drop everything and take myself off for an hour for a potter round a local bluebell wood.  It’s just so relaxing and pretty and really rejeuvenated my soul.  The smell was divine, there were butterflies and bees by the hundreds, the birds were singing in the trees and I was surrounded by half a mile of flowers.  I took butties and a flask with me and just sat and took it all in.  Annnnnd breeeeathe 🙂

While I’m having a spurt of energy, which we all know won’t last, I’ve been cracking on sorting out my car port following the installation of my new little shed.  Now, I know having a shed delivered and painting the doors up to look nice barely registers on healthy people’s radar, but when you are so ill cooking a meal or taking a shower can defeat you doing any kind of DIY project is a big deal.  So I’m tickled pink with my new look car port and if that makes me a saddo then so be it 😉 My neck, right wrist and shoulder aren’t quite as enamoured by my days of painting said shed though it has to be said and I now can’t turn my head.  Here are the before and after pictures, just don’t ask me where all the junk has gone 😉 :

Before

After – spot my mobility scooter on the left!

I’ve now sorted out my trip to Sheffield to see Dr Sargur re my MCAD.  I’ve booked a hotel and my train tickets, and arranged for Bertie to have a sleep over with his Nan and Granda, so hopefully I’m all set.  Please God may the NHS not cancel the appointment because my £99 hotel bill is non-refundable.  What’s with charging extra for breakfast these days in hotels?  Are you supposed to starve while you’re on your hols?!  It’s outrageous.

I found out this week I’ve won yet another gold medal in an International Salon, this time with my Ophelia photo.  That makes 5 so far this year and we’re only in May!  I’m just a country bumpkin who spends half her life in bed, am self taught and only 6 years ago didn’t even own a camera, so if someone even likes one of my pictures it’s huge.  To be winning gold at world level is just so surreal it’s like it’s happening to someone else and I keep thinking that one of these days the judges are all going to realize I’m a fraud and demand their medals back!

 

Singleton v Smug Married

There has been a thread on the ME Association’s Facebook page this week about romantic relationships.  As part of M.E. awareness week, a positive story of someone with M.E. who found love despite their health problems was shared and the headline was ‘M.E. is no barrier to love and marriage’.  However, it caused a bit of a backlash because as many sufferers quite rightly pointed out M.E. is a barrier to love and marriage.  For some it’s a surmountable barrier and for others not, but I think we all agree that chronic health conditions have the potential to affect our romantic relationships or to make it difficult to find love should we be single.

I was in a committed relationship when I became ill with M.E.  However my boyfriend was just 24 years old, had high flying career ambitions (he later became an editor at Sky news in London) and he simply couldn’t cope.  He didn’t want to cope and at his age who can blame him.  So when I became severely affected and bedridden I broke up with him.  I couldn’t have lived with myself if I’d ruined his life, and make no mistake about it I would have ruined his life.  He’s gone on to have the career he dreamed of and his now married with triplets, none of which would have happened had he stayed with me.

For my entire thirties I was bedridden with severe M.E.  I couldn’t even get dressed or brush my teeth let alone cope with a romantic relationship.  The loneliness and longing for a partner at times was an actual physical ache but there was simply nothing I could do about it.  Having said all that, I do have friends with severe M.E. who found partners and went on to get married so it’s not impossible, but it isn’t the norm.  The more severely affected you are the less likely it is that existing relationships will last and the harder it becomes to meet someone new.  That’s just the reality of the situation.

On the thread, there were several women whose partners also have M.E. and they met through support groups.  I find this great but odd, as M.E. affects mostly women and all the support groups I’ve ever been to have been 95% female.  Any men who attended were married because the reality is that men’s marriages do tend to survive chronic illness as it’s less likely that women leave men who are sick.  I also think it must be difficult if both of you have M.E. and the disease affects you in different ways.  Many of my friends have day/night reversal, for example, where they sleep til lunchtime and are awake half the night, whereas I’m the total opposite and am awake at 5.30am and half dead by 4pm.

After my improvement and now moderately affected, in my early forties I decided to try and find a partner.  I live in a sparsely populated rural area where sheep outnumber people 10:1 so it wasn’t likely I was going to bump into Mr Right in Tesco, therefore I decided my best bet was online dating.  I did that for 3 years and met the very dregs of society.  I lost count of the number of middle aged men who sent me pictures of their penises despite the fact we’d never even met, the men who ranted non stop about their ex-wives, the commitment phobes, the philanderers, the deluded fools who thought they were Brad Pitt but whose profile picture was Danny Devito, and the rest who wanted to spend their time white water rafting or climbing Helvellyn, neither of which I could do.  The handful of really nice guys I came across lived literally hundreds of miles away and because of my energy limitations I wanted to see someone for a couple of hours a night but they ended up staying the entire weekend because of the distance involved and it was just way too much for me.  Thinking long term, by the time you’re in your forties you both have established lives with families and jobs and friends and homes and it doesn’t matter how understanding someone is there are practicalities involved and the situation often just doesn’t work.  Maybe if I’d lived in a city I would have stood more of a chance of meeting someone locally, or maybe not.  Again, I’ve read about people who have tried online dating and gone on to meet the love of their life so it is do-able, for some people at least.  It just didn’t work for me.

All this aside, the biggest barrier for me personally in finding a partner is the very careful way in which I have to live.  I have 3 severe health conditions which have to be very precisely managed otherwise my life turns to shit.  I have a routine which if veered from for any length of time sees me bedridden.  I have to be able to sleep and I can’t even bare the dog on my bed at night let alone a snoring, duvet stealing man.  I have to eat a very specific diet.  My brain needs peace and quiet for the majority of the day.  I struggle to do any kind of activity outside my home, let alone something on a regular basis.  Car travel is tortuous.  You get the drift.  I’m not sure how I’d cope trying to fit all that around another person and I’m not sure what another person would get out of a relationship with me – even I find my life frustrating and limiting.  Obviously there are some men who can cope, but they are very few and far between and become even fewer by the time you’re in your fifties and like I mentioned earlier have a well established life.

So, while it’s heart warming to read that people can maintain existing relationships when chronic illness strikes and that singletons can find love despite their limitations we also do have to recognize that for many people this isn’t the case.  Marriages fall apart and the barriers to finding love when you’re sick and single can be overwhelming.  I gave up trying to find Prince Charming several years ago because I couldn’t cope with the constant disappointment (or the weirdos!) so if it happens for me I’m literally going to have to bump into him in Tescos which, considering I have home delivery, is unlikely 😉