Tag Archives: M.E.

Missing Out

Summer can be a difficult time for the chronically ill.  Not just in terms of the fact that heat can make us feel rubbish and allergic reactions increase due to pollen and insect bites and all manner of other hazards, but the fact that healthy people are having fun.   As I lie in bed in the evenings with my window open I can hear my neighbours chatting, drinking and laughing over their bar-b-qs and every day when I log on to Facebook it’s to see the smiling face of yet another healthy friend sipping cocktails next to the pool in some foreign country as they enjoy their annual holiday.

Even after all these years it’s still hard to be faced with other people’s fun and the fact they’re making memories they will rely on in their old age while I’m stuck in bed alone for the 8,760th day on the trot.  I haven’t been abroad since 1996 and haven’t had a holiday in this country in over a decade – I’ve no-one to go with, everywhere is too far to drive on my own, I’d have to hire a cottage because hotels are too noisy and I’d have no-where to store my low histamine meals, I’d have to take Bertie with me and walk him every day as normal, and I’d have to spend weeks beforehand making food to take with me so would need a holiday to get over preparing for my holiday!  It’s just easier to stay at home with my freezer and my paid dog walker.

Having said all that, I’m also aware that I’m no longer bedridden and do get to enjoy days out while many of my severely ill friends do not.  I received an email off a lovely, dear friend of mine this week who has been housebound with M.E. for over two decades asking what I’d been up to………….and I didn’t tell her.  I didn’t tell her about my Castle trip and the awesome bird displays.  I didn’t tell her about the Farm Park and seeing the Wallaby & Joey.  I didn’t tell her that yesterday I’d been to the seaside and felt the warm, salty breeze on my bare skin and eaten ice cream with a couple of old codgers from my Camera Club.  She doesn’t need to be reminded about all the fun she’s missing out on even though she’s so lovely I know she’d be thrilled for me that I am now able to get out and about.

I feel lonelier in summer than I ever do in winter.  When its freezing and blowing a gale outside I know that everyone else is stuck indoors like me, whereas in summer most people are outside enjoying the beautiful sunshine while I am yet again confined to bed.   The feeling of missing out on life is so much stronger and the knowledge that most other people are spending time with their partners, families and friends while I am lying here alone is felt that much keener.

Yet I am still grateful.  Grateful that I at least get to glimpse the sun, get to travel to the ocean, get to sit in my garden, get to each ice cream with old duffers and get to walk my dog, while many of my friends lie alone in stifling darkened rooms suffering the tortures of hell.  My life isn’t easy but it’s easier than that and I am thankful.

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Weekly roundup

Summer has officially arrived here in the UK and the weather has been perfect – sunny, 20C and with a nice breeze.  I have felt brilliant for most of the week.  I do sooooo much better in nice weather, so long as it’s warm not hot.  My pain levels aren’t any less but I just have more energy and am usually more clear headed – I have no clue why.  The problem with this is that I then tend to do too much and end up in a heap on the floor.

I went to bed Sunday night excited.  I was having a day out the next day and was really looking forward to it but I should have known better than to think my body would co-operate.  I started with grumbling stomach pains at about 8pm.  My bowel had been playing up since my period ended eight days earlier so I thought it would just settle down.  Wishful thinking.  The pain got worse and worse until at 3am I gave up trying to sleep and risked taking some Junior Ibuprofen, which did eventually allow me to nod off some time around 4am.  Bertie woke me at 6am, however, so that was the end of that.

Two hours kip isn’t ideal for an M.E. person about to embark on a huge day out, but despite that and the continuing stomach pain Monday I had one of the best experiences of my life.  I went with a couple of friends from my Camera Club to a Castle in the south of Cumbria.  The weather was stunning, the Bluebells and Rhododendrons were in full flower and I had a perfect day (I can count on one hand the number of times I’ve said that in the last quarter of a century!).  The reason we went to the Castle is that they do bird displays, which were absolutely magical.  First were the owls, who flew above our heads and weaved in amongst the crowd to music.  Next were the birds of prey.  Vultures, Kites, Buzzards and Merlins whose aerial acrobatics, again to stunning music, took my breath away.   And the highlight of the day was feeding wild Heron in a sunlit meadow.  Herons are notoriously shy birds and I never thought in a million years I’d ever get to within 10 feet of one.  I know it’s not everyone’s idea of fun but it’s mine and I loved it 🙂
Last year a developer put in plans to build 10 large houses on a field next to my house.  The whole village was against it and successfully fought to have the plans rejected, but this week the developer put in fresh plans for 6 houses instead.  At the same time he’s appealed the rejection of the original plans to the Secretary of State, probably thinking we’ll be so busy fighting that we won’t have time to fight the new plans!  So Tuesday night I attended a Parish meeting to discuss the situation then had to put together objections to the new plans and submit them by Friday.

My post-exertional malaise usually comes on 48 hours after I’ve done something, so I woke on Wednesday feeling like I’d been trampled by a herd of wild elephants wearing hobnail boots.  It was my cleaning day but my Cleaner, whose Dad is terminally ill, didn’t show up for the second week running so despite feeling like crap I had to change the bed sheets, do some laundry and clean the worst bits of the house.  I could have done without it and manage to injure my wrist and thumb which are now in a brace.

Thursday I’d arranged to visit an animal park half an hour’s drive away with my best mate which probably wasn’t my best ever plan considering  I was sore and exhausted, but we still had a giggle at the goat racing and ferret hurdling, plus I stuffed my face with veggie burger and fries and still had room for a pudding 😉
Saturday I got my garden furniture out of the shed.  It hasn’t seen the light of day for 2 years cos last summer the sun forgot to arrive, and mice had nibbled two ginormous holes in my swing seat cover, but I’m just grateful it’s nice enough to sit outside even if the local midgies think I’m breakfast, lunch and dinner.  Of course, I came inside at noon to watch Harry and Meghan get married.  I keep waiting for my prince to come but he’s taking his sodding time and I hope when he eventually turns up he isn’t ginger with a beard.  He can be as rich as he likes but and I wouldn’t mind if he had a dysfunctional family cos mine would fit right in 😉

 

 

Killed by M.E.

The death of a young British woman has officially been attributed to M.E. this week and is the second time in Britain an Inquest has recorded M.E. as causing a sufferer’s passing, the first being Sophia Mirza in 2006.

Merryn was 21 and had suffered from severe M.E. since she was 15.  In the end she simply couldn’t tolerate food and starvation lead to her tragic death.  When I was severely affected I was simply too weak to eat solids.  In those days M.E. wasn’t treated in any way and my GP just said to get some Complan from the chemist 😦  I lived off smoothies for a year which in no way provided enough nutrition and, like Merryn, weighed under 6 stones (80lbs/36kilos).  When I was hospitalized they sent for the psychiatrist who put in my notes that I was anorexic – I couldn’t get them to understand that I was starving and wanted to eat but my body just wouldn’t take food!

Reading through Merryn’s story it was interesting to see that her M.E. began with hives and swelling following a holiday in Europe.  Knowing what I do about mast cells and my own situation I can’t help but wonder if they were involved and of course MCAD can cause awful problems with the gut.  It is not, however, going to show up on testing unless you specifically look for mast cell mediators which at the moment requires a person to go to a lab and have fresh samples done, something a severely affected M.E. patient is way too ill to do.

Merryn’s family had the brave forethought to donate her body to the M.E. Association’s Ramsey Research Fund for examination and the pathologist found brain ganglionitis (ie inflammation).  This has been found before on the post-mortem of another M.E. sufferer.  The pieces of the puzzle are consistently all there if only Doctors were properly looking for them.

My heart goes out to Merryn’s family.  I can’t imagine what the years of her illness, or the past 12 months, have been like for them.  They have been so strong in donating her body to help other sufferers and I’m just relieved that the Inquest quite rightly put Merryn’s death down to this devastating disease because if she didn’t have it she would still be alive.

 

 

The same but different

When healthy people talk about illness they seem to think sick people are all the same.  They have a disease with a defined set of symptoms and a set treatment plan and that’s the end of that.  Only of course it’s not.

People with hypermobile Ehlers-Danlos Syndrome are all different.  One member of the family may have mild symptoms that don’t cause them any problems (like my brother) and others may be so ill they are frequently hospitalized.  One person with hEDS may also have POTS and another not (I have dysautonomia but not POTS).  Some people dislocate joints willy nilly yet I thankfully only sublux and then not until I reached my forties.  Yet we all have the same genetic disease.

Mast Cell Activation Disorder is even worse.  I react to almost all medications, herbs and supplements but so long as I avoid high histamine foods can eat quite a varied diet.  Other people can only tolerate a handful of foods but can take as many drugs as they like.  I’ve had grade 3 anaphylaxis but never any swelling, while other people swell like a balloon.  I have seizures, other people don’t.  I get hives but no joint pain.  Other people have awful pain but no hives.

M.E. is a spectrum disorder, in a similar vein to Multiple Sclerosis.  There are those who are mildly affected and can work or raise children, while others are completely bedridden and reliant on round the clock care.  Some people sleep 23 hours a day while others are plagued with insomnia.  Some people are physically knackered but mentally fairly good, while others have horrendous brain symptoms but can walk the dog every day.  Some have swollen glands and a permanent sore throat, others don’t.

It’s easy to beat ourselves up when we read about a fellow sufferer trying a drug or treatment which has helped yet when we try it we end up ten times worse, but what works for one person simply doesn’t work for another.  I actually groan out load when I read yet another “x, y or z cured my M.E.” story in the newspaper because everyone I know will then ask if I’ve tried it, like I’ve lain in bed suffering unimaginable horrors for 24 years not bothering to try every fucking treatment known to mankind.  Or someone tells me about a hEDS patient who ran the London Marathon, the implication being that if only I tried harder I too could be an athlete (I am an athlete, cos I shower twice a week and it’s the equivalent of climbing Great Gable Fell!).

I wish I had a well defined disease which could clearly be seen on an MRI scan or under the microscope and then cured by a tablet or surgery, but I don’t and it’s that which causes suspicion.  Suspicion that I’m not, in fact, sick at all because conventional tests look fine.  And I wish I had a disease which affected me the same way it affects every other sufferer in the world, but I don’t and it’s that which causes confusion.  Confusion that someone else with M.E. can still work, or that someone else with hEDS can do pilates, so why can’t I?

I can’t measure myself against anyone else.  Although I share similarities with other patients our stories are different.  I have M.E but I also have hEDS, MCAD, HIT, endometriosis, adenomysosis and a brain injury all of which interact with each other.  My MCAD affects my M.E. which impacts my hEDS and my four weekly menstrual torture affects every sodding thing!  My inability to tolerate drugs has massive implications for treatment and effectively rules out surgery, as does my inability to be able to exercise in any form.  I’m really happy when other sufferers find something which helps but the complications of my diseases means that someone else’s saviour will probably not be mine, especially when I’ve been ill for nearly a quarter of century and irreversible damage has already been done to my body.

We are similar yet unique.

 

 

Weekly roundup

I’m shattered.  The last few weeks have been quiet, but this week everything’s happened at once and I’m feeling like a wound down Duracell bunny who’s had a blow to the head.

In the new year plans were submitted for a housing development in a field next to my house.  We all fought hard to have it rejected and thankfully the local planners turned it down.  New plans were submitted for a much smaller development of 6 houses, more in keeping with the tiny hamlet where I live, which we were all basically happy with however on Monday we learned that the developer has appealed the original decision which is going to the Secretary of State in June.  FFS.  So now it’s a mad scramble to learn as much as we can about planning laws so that we can fight it……..again.

Tuesday my Dad took me through to the city for an opthamology appointment regarding my severe eye floaters.  The Doctor took one look and told me they were so bad I’d have to be referred to a better hospital, so I’m now waiting for an appointment at the RVI in Newcastle.   She also worried me by saying she’d seen something other than floaters in my eyes, so lord knows what that’s all about.

Wednesday my kettle decided to die, so I’ve had to fork out £90 for a new one.  Every sodding time I get on my feet financially something happens to stick me back in the red again.  I love my kettle though – it’s one that stays just below boiling all the time so I have instant hot water 24/7 for both cooking and brew making.  Plus it’s push button – tipping my old kettle up killed my wrist.

Thursday I drove an hour to the coast with my Mum for a bone density scan.  By the time she was 54 she’d lost one third of the bone mass in her spine from Osteoporosis.  It runs in our family as her Mum suffered, as did her sister and niece.  She was put on HRT in her mid fifties and her bone health improved substantially, however she started spotting so was taken back off HRT and put on weekly Alendronate (Fosamax) tablets instead.  Her bones were never monitored after that, though, so we’ve no idea how helpful or not it was.  A few years ago an injection was approved for the treatment of osteoporosis so Mum switched to that every 6 months, but again we’ve no idea if it’s been working.  She hasn’t had a bone density scan now for 20 years which is a sodding disgrace.  She shouldn’t be having to ask the GP to refer her, especially as she’s already had a fractured wrist.

This weekend there has been a big photography event at which my Camera club had an exhibition.  Friday I volunteered to help set everything up, not knowing that out of the four other volunteers one would bugger off after the first half hour and two others after the first hour, which left me and another woman to put up over 100 prints.  It took 3½ hours and I was so exhausted and in so much pain by the time I got home I didn’t know what to do with myself.

Saturday was International M.E. Awareness day.  There were lots of articles in local papers here in the UK, appearances on TV and radio by people affected by M.E. and a short documentary on the plight of sufferers was made which can be seen here.  I post stuff about M.E. on Facebook all the time but I’m sure only other M.E. sufferers ever read or view it which kind’ve defeats the object :-/

And as if all that weren’t enough I had my period.  When are they going to STOP?!!!!!  On the plus side though some of them aren’t as painful as they used to be endometriosis-wise and this month I have not had a migraine during my period despite the fact I’m exhausted and really busy, hurrrrahhh!

Two lovely things have happened this week too which really lifted me.  When I was at the photography exhibition, another photographer who’s on my FB page but who I don’t know well came up to me and told me she loved seeing the photos I post on Facebook and how well I did considering my ill health and everything else I have to cope with.  And I also received a truly lovely message off a lady in New Zealand I ‘met’ through following each other’s blogs on our dogs, who told me how proud she was of me for my photographic achievements and how much she enjoyed seeing all my photos.  How fabulous of these two ladies to take time out of their day to give me support and encouragement – made me feel all warm ‘n fuzzy inside 🙂

 

 

The Heart in M.E.

I am a sun worshipper, probably because I live in the wettest place in England and we don’t see much of it, so the second the sun does come out I’m there basking like a lizard on a stone.  However, although it reduces my pain levels and makes me feel mentally good it kills me physically.  I can’t sit directly in the sun because I start to sweat, then my heart has to start pumping harder to cool me down and very shortly I feel like I’ve been hit by an express train – weak, brain fogged, fluey, achey and just generally ill.  When I was severely affected with M.E. I couldn’t go outside in hot weather at all.  After just half an hour I felt so poorly I would have to crawl my way back to bed and it would take hours for me to recover.

There’s been lots of research which has looked at energy metabolism and muscle dysfunction in M.E., but just lying reclining on a sun lounger doesn’t require mental or physical exertion or muscle energy expenditure.  Sweating, however, requires an increase in cardiac function.

I don’t know why in all these years I haven’t thought about that before.  It just came to me the other day when I was outside in the little mini heatwave we’re having, wanting to lie with my head in the lovely sunshine but knowing I couldn’t because if I did I would get too hot and feel like I’d been run over by a bus and I’m not alone.  The majority of my friends with M.E. find hot weather makes them worse and none of my severely affected friends are able to sunbathe.  The same goes for hot baths, which are hugely beneficial for my muscle spasms and pain levels but make me feel absolutely rubbish in every other way.

When I’ve given it thought before I always assumed it was a dysautonomia problem.  Heat causes your blood vessels to widen, which causes more blood pooling in the feet and less blood reaches the brain, and while I’m sure that’s still part of the issue it’s not the full picture.  I get ill lying down in the sun so the POTS theory doesn’t really fit.  It suddenly dawned on me that the only thing having to working extra hard when I’m hot is my heart.

M.E. is a disease of exercise intolerance.  Having a shower, for me, is like climbing the north face of th Eiger and leaves me absolutely and utterly knackered.  I haven’t run in over two decades and doing any activity which elevates my heart rate flaws me.   You would think there absolutely has to be a cardiac problem involved in M.E.

Several small scale studies have been done on heart function, mainly by the CFS research team at Newcastle University in the UK, and although they’ve found some abnormalities in short QT waves and output nothing major which affects all patients has ever shown up.  Something catastrophic is happening inside our bodies but no matter how hard researchers look so far they haven’t been able to figure out what’s going on, which is the main reason the disease has always provoked such controversy.

Decades of research has now been carried but IMHO we’re realistically no further forward in finding out the cause of M.E.   Little clues here and there but nothing concrete or definitive.  I wonder when, or if, that’s ever going to change?

 

Weekly roundup

The sun is shining for a change, hurrahhh, and Bert and I have had a couple of lovely walks down by the river wearing a t-shirt for the first time this year (me that is, not the dog – the dog thinks clothing is for wusses).  At least they would have been lovely if it weren’t for the fact that I feel like death warmed up.  I have had a week of hormone hell.  Not sleeping, not eating and so emotional I’ve felt like I was losing my marbles.  One minute raging, the next minute weeping and generally just feeling overwhelmed and like I’m crawling out of my skin.  I hate not being in control of how I feel and am so exhausted I could sleep on a washing line.  When is this Menopause shit going to be over?!

Thankfully I’ve had a fairly quiet week which is a good job as I’ve barely had the energy to shove a meal in the microwave, however my cleaner didn’t turn up on Wednesday so despite the fact I’ve only just got my back pain to settle down I had to start changing the bed sheets (the dog had been in the river then come home, snuggled actually in the bed under the duvet and left a huge muddy wet patch where I sleep) and washing the floors (I swear they are so dirty they must be hazardous to human health).  She’s let me down so often now I think I’m going to have to find someone else.  It’s all been legitimate – she was off work 3 months with a bad back, various weeks when her daughter was off school ill and now her Dad is terminally ill with cancer – but I think she forgets the reason I have a cleaner is that I’m not well!  She also took on walking Bertie two days a week, which lasted all of 2 months before she decided she didn’t like it and quit.

The Doctor rang me about my Dad but thinks that none of his symptoms are linked to the kappa paraprotein in his blood.  I’m still not convinced as she couldn’t explain his chronic fatigue, but she has referred him again to the spinal unit to have another look at his back so I’ll mention my concerns to them and see what they say.

Stuck in bed and feeling bored I decided to write an article for a national photography magazine on overcoming obstacles.  I’m disabled with a hobby which involves being mobile and skint in a hobby which can cost the sodding earth, so I wrote about how I’ve managed to find ways round these limitations.  The magazine editor happened to belong to a Camera Club in southern Scotland and he liked the piece and my photos so much he’s asked me to go along and give a talk one night at his Club.  Gulp!  I hate committing to stuff because I never know on any given day how I’m going to wake up feeling, but at the same time it’s flattering to have been asked.  My lovely friend John has offered to drive me so I think I’ll give it a bash and see how it goes though it won’t be until after September when the new season starts.  Without my photography I honestly think I’d be losing my mind at the mo.

My elderly neighbour Sam and I were talking about Scampi the other day.  She said she’d had some Whitby scampi and how nice it was and I mentioned I’ve never tried it, so two days later she rocked up at my house with a packet for me.  Aren’t some people kind? 🙂

Today is my parents’ Ruby wedding anniversary.  40 years of bickering and having absolutely zero in common 😉  My Mum was with my biological Dad for 18 years before that, so she’s been married for nearly 60 all in all.  Blimey.  My step-brothers, aunt, uncle, nieces and partners are all going out for a meal tonight to celebrate.  I can’t stand my Uncle, who shoots beautiful wild animals for fun, or my eldest brother who in 7 years has never once offered to do a thing for our parents, but I’ll grin and bear it and a least I’ll be eating food I haven’t had to cook myself!