Weekly roundup

I have been so naughty this week.  I’ve got the most intense cravings going on, so I caved and have chomped my way through a whole tube of sour cream ‘n onion Pringles, a family bag of Starburst, a family bag of Wine Gums, a frozen mushroom pizza (my first bought tomato-based pizza in 5 years) and a small tub of Salted Caramel Haazen Dazs ice cream.  I’m sure none of that has done my histamine bucket any favours and I’ve probably gained 5lbs but I swear my hormones thanked me and I loved every second of my binge 😉  Fuck it, you only live once and it’s not like the sky fell in or anything.

Tuesday night was the last evening of our beginner’s photography class so I hauled my exhausted arse along to show support even though I wasn’t lecturing.

Wednesday I decided to spend half an hour in a wildflower meadow taking selfies for a photo I had in my head.  Stupid here forgot to put her insect repellent on though and I’ve spent the days since covered in huge blistery, itchy bites.  The photo turned out OK though so that’s the main thing 😀

After having 6 weeks off to nurse her Father who has now passed away, my cleaner didn’t come again this week as her daughter had a hospital appointment.  I know they’re all legitimate excuses but when is she going to realize that the reason I have help in the house is that I‘m sick?!  If she worked on the tills in Tesco she wouldn’t have been given 6 weeks off, dying Dad or no dying Dad.  When my Nan passed away my Mum had one day off her 40 hour a week job for the funeral and that was that, even though she’d been taking turns to sleep on my Nan’s couch for 3 months beforehand to nurse her.  We all have stuff going on in our lives but the world doesn’t stop turning and we still have to work – she’s only here 3 hours a week for heaven’s sake.  Maybe that sounds harsh, but including holidays she’s had nearly 7 months off in the last 18 during which time I’ve lived in a dirty house and slept in a dirty bed and the reason my hand is currently killing me is because I tried to change the bed sheets myself in her absence.

Speaking of which, the only solution I could come up with to help my CMC joint was to tape my hand.  I found some YouTube videos showing the best way to go about it which I modified to cover all the areas which are sore, but I have to admit it’s not helped so I think I’m going to have to see the Doctor *sigh*.

Friday I had the plumber here servicing the gas boiler and fire and fitting a thermostatic valve to one of my radiators.  I also had the builder here quoting to re-grout my patio.  My house needs some expensive jobs doing, like a new front door, but as I’d love to move to a one story house in the not too distant future I’m hugely reluctant to spend yet more money on this one.  I’ve been looking for a new home for a year now though and had no luck so I could still be here in 5 years time and it’s difficult to know what to do.

Today is Father’s Day (why is there no Daughter’s Day?!) so I’m going out to lunch with the folks even though I feel rubbish and am absolutely wiped.  I know I should be grateful that I’m well enough to go out after spending years bedridden, but it’s not like I’m going to enjoy it – my Dad is loopy loo and my Mum will start off whiny and snappy (there is always something wrong with the food) then get increasingly giggly and stupid the more wine she drinks – so to be fair I’d rather be stopping in bed cuddled up to Bert and working on my photos.  Neither of my brothers has ever taken my Dad out on Father’s Day even though he’s their biological Father and not mine.  Why does this stuff constantly fall on my shoulders just because I’m single?

As you can probably tell I’m hormonal, crabby and not feeling well so I’ll shut up now, go and get some breakfast and try to find my happy head.  Onwards and upwards!

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Mast Cell Triggers

MCAS is a very individual disease.  We will all react to different things and to differing degrees  but it’s still comforting to read about other people’s experience of mast cell disease and to know we’re not alone.

My reactions take on several forms:

• Cutaneous: flushing, itching, hives, blisters, rashes.
• Brain: migraines, brain fog, seizures, memory problems, altered consciousness, speech problems.
• Gut: nausea, retching, oesophageal spasms, increased urination, constipation, diarrhea, gut pain and cramping.
• Ocular-nasal: sneezing, stuffiness, runny nose, nasal and eye itching, eye redness & watering, eye pain and soreness, light sensitivity.
• Cardio-vascular: palpitations, chest pain, breathing problems, blood pressure rises and falls, vertigo, dysautonomia.
• Systemic: fatigue, weakness, widespread non-specific pain, feeling fluey, muscle spasms, pins & needles, fight/flight, pacing, anxiety, feelings of doom, insomnia.

I can either suffer from the symptoms of one these categories on their own (eg. birch pollen season gives me hayfever but little else), or in combination with other categories, for example drug reactions give me just about every mast cell symptom known to man. My reactions have also changed significantly over my life-time.  As a child I had flushing, bowel problems and fatigue but nothing so out of the ordinary that it wasn’t just put down to being normal!  As a teenager, once my hormones had kicked in, I added chronic headaches, aura migraines, skin itching and one drug reaction to the mix.  By the time I was in my mid-thirties I also had widespread pain, increased urination, oesophageal spasms, severe M.E., severe insomnia, chronic nausea and several drug reactions.  And then when I hit my early forties I became almost totally drug allergic, developed food reactions, Histamine Intolerance, hives, hayfever, my hEDS went bonkers and I peed so much I honestly thought my kidneys would pack up!

Here is a list of the things which currently cause my mast cells to behave badly:-

1. Emotions

Emotions are one of my biggest triggers, but the reaction is mild.  Being excited brings on a flush, makes my skin itchy and sometimes brings me out in a rash.  Being unhappy,   particularly if I’ve been crying, does the same but also makes me feel fluey and wiped out afterwards.  Arguments are to be avoided at all costs as they always involve not only flushing but also rashes and/or hives and make me hugely brain fogged and exhausted.  This is the rash which appeared on my tummy after someone was bitchy to me on a Schnauzer Forum!

Chronic stress, however, is a different kettle of fish.  Eventually I will break out in hives, start reacting to foods, develop insomnia, have to get up in the night to pee (sometimes several times), my already poor memory goes to hell on a hand-cart and eventually I will end up bedridden, fluey and exhausted.  This is why I need a quiet, structured life with as few surprises as possible.

2. Drugs

I am one of the most drug allergic people I know.  From herbs to supplements, painkillers to steroids, anti-histamines to anti-depressants, sedatives to anti-emetics my mast cells reject them all.  I have an ocular-gyric crisis to anti-nausea drugs like Stematil, and Grade III anaphylaxis to most of the others (there is currently no universal grading system for anaphylactic reactions but one of the most common is the Ring & Messmer scale which you can see on the Mast Attack site).  Here is my facial flushing after a drug reaction:

Unfortunately the reaction doesn’t stop when the drug is out of my system.  Mast cell activation can perpetuate mast cell activation and for me the whole thing goes round and round in circles until something eventually breaks the cycle.  My longest reaction has been 3 weeks until my heart was so poorly from the constant palpitations I was blue lighted to hospital with a suspected heart attack.

My drug reactions can also make me ill for months afterwards and so weak I’m bedridden.  Needless to say I don’t take any drugs, herbs or supplements unless I am so desperate that being potentially bedridden for the next six months is worth it!

3. Hormones

Entering peri-menopause is what triggered my MCAS to go from mild to life-threateningly severe.  I’m convinced I was born with MCAS just like I was born with hEDS, but apart from my increasing drug reactions and almost daily flushing it didn’t become really serious until I was 44 and my hormones started to fluctuate.  I started reacting to foods, which I’d never done before, developed hay fever, hives, started peeing during the night and my migraines went off the charts.  I also stopped tolerating any medication, even things I’d taken for years without a problem.

I’m unfortunately still having regular periods and in the week leading up to The Curse I can have hives, itchy skin, rashes, nausea, widespread muscle pain, am clumsy and my chronic fatigue ratches up a notch or ten.

4. Seasons, plants & animals

I had no idea until I had skin prick allergy testing that I was allergic to Birch pollen and as a result of that also have problems with apples which make my throat and lips tingly and itchy.

I also get an itchy skin rash from fir trees which I discovered when I moved into a house that had several of them in the garden.  Needless to say I chopped them all down and now have an artificial Xmas tree!

I had a strong reaction to dogs on skin prick testing but I’ve never noticed any problems being around them – no itching, eye problems, sneezing or anything else, which is brilliant considering I have Bertie!  My brother, OTOH, only has to be in the same room as a dog for two minutes and is sneezing his head off and his eyes are streaming.  He’s also allergic to horses but not to cats!

5. Insect bites

I did a self portrait photo in a lovely wildflower meadow last week and stupidly forgot to put on insect repellant beforehand.  I didn’t realize until I got home and started to itch like a son-of-a-bitch that I’d been eaten alive by tiddly little flying critters and four days on am still having to use steroid cream for the itching, swelling and redness.  I have an exaggerated reaction to insect bites, from mosquitoes to gnats, and have ended up in A&E before now just from being nipped by a midgy.  The itching is out of all proportion to the size of the bite wound and drives me absolutely bonkers – here is one of last week’s little nibbles on my thigh:6. Hot water

I know, it sounds nuts to be allergic to hot water but sadly I am!  I luuurve my baths as they’re one of the few things which help my pain levels, but they do make me itch, itch, itch and I’m zonked afterwards.

I am not, however, allergic to heat per se.  I love warm (but not hot!) sunny weather and usually feel my best when the weather is nice!

7. Viruses, Vaccinations and Trauma

Splitting my lip open and having it stitched the other week made me feel rotten for several days as did having a molar removed a couple of years ago.  Wounds and trauma, which necessitate an immune response, naturally plays havoc with my mast cells though usually any reaction is short lived and just involves increased brain fog, nausea, muscle weakness, fatigue and generally feeling a bit fluey and not well.

Viruses and bugs are much more serious and can leave me bedridden for weeks or even months.  The weird part is, though, that just before I come down with a virus I feel absolutely brilliant.  For 24-48 hours 80% of my symptoms disappear and I feel fabulous……….and then the virus hits and I am floored.   I can have a variety of reactions to viruses, from simply feeling a bit MEish, fluey and unwell to full on grade III anaphylaxis the after-effects of which can last for months.

Vaccinations, however, are the worst of all.  The last jab I had was for travel abroad and it was that which led to me becoming severely affected with M.E. and being bedridden for a decade.  One of the immunizations was against meningitis and 5 days later I got meningitis!  I also had a measles vaccine as a child and still went on to get measles, though admittedly not as severely as if I’d not had the vaccination.  My immune system just doesn’t respond in a normal way to jabs and I will never, ever have another vaccination as long as I live.

8. High histamine foods

While it’s unclear whether my food reactions are as a sole result of my Histamine Intolerance, or whether mast cell activation is also at play, I started reacting to high histamine foods when I was 44 having never had a food reaction before in my life.  Within about 20 minutes of eating I’d develop palpitations, my blood pressure would plummet, I’d flush, have oesophageal spasms, retch, pee and pass out – not necessarily in that order.  It was terrifying and I became almost phobic to eat anything as I had no idea at the time what was happening.  It took nearly a year to discover I had HIT and needed to follow a low histamine diet, which thank God has kept my food reactions at bay.  However, during times of mast cell activation my food histamine bucket over-flows much more quickly and I can have more food reactions that I would when my mast cells are calmer.  It’s a constant balancing act, especially while I’m menopausal and my mast cells are all over the shop.

9. Alcohol

Although some alcoholic drinks are high in histamine so are a no-no due to my HIT, some are not but I react to them anyway in the same way I react to high histamine foods and some drugs.

10. Doing too much

The busier I am, and in particular the less rest I get, the more reactive I become.  I’ve no idea why this should be and it kind’ve sneaks up on me, so I have to be mindful when I’m busy that I can’t keep that level of activity up forever without consequences.  Not only does lack of routine, doing too much and not enough rest make my ME worse it also makes my MCAS worse and after only a few weeks I’ll have a hive outbreak, stop sleeping, stop pooping and start peeing like a racehorse.  In fact  I’m doing just that at the moment, probably as a result of my recent mouth injury, rampant hormones, eating crap (I actually had a frozen pizza last week for the first time in 5 years, just because I wanted one god dammit!) and trying to socialize more than I should due to my current feelings of isolation.  My histamine is definitely way up and I really should take more notice of that, rest more and stop eating rubbish.

 

That’s the bad news, but there is good news too, albeit on a small scale.  Since starting a low histamine diet my migraines are less than they were and my almost daily headaches have disappeared completely.   My horrendous, intractable, untreatable insomnia has improved dramatically after not sleeping for over twenty years and I rarely now have to get up in the night for a wee.  I used to react really badly to smells and fumes, like bleach and hairspray, but for some reason these no longer bother me and despite my exaggerated reaction to insect bites I’ve been stung by a wasp and had no reaction whatsoever.  So it’s not always the case that MCAS will continue to progress and there is at least scope for small improvements.

I’ve no idea what will happen once I’m through the other side Menopause.  If my hormones are the cause of much of my mast cell madness I’m hopeful of at least some improvement once they’ve finally jogged on which, as you all know, can’t come soon enough.  Time will tell.

 

Weekly roundup

I spent the first half of the week feeling a bit sorry for myself.  Turns out having your face battered is painful and it knocked me about in general, making me MEish and unwell.  For five days I could only eat soft foods, had to drink through a straw and cleaning my teeth made my toes curl.  Couple that with having my period and I felt proper miserable.  However, a lovely friend from my Camera Club rang me on Monday to see how I was and suggested we meet for tea and cake which was really kind of her and helped me feel less alone.

I had to buck myself up on Weds, though, as it was my Mum’s birthday and we were going out for lunch although first I had to go back to the hospital for my stitches out.  The Doctor had made a really nice job and so far it looks like the wound is healing well, which is a relief considering how uncooperative my skin can be.  Lunch was OK but when my Mum orders a humongous glass of wine it still makes me feel sick inside, though to be fair she is drinking a lot less than she used to.

Thursday I chased her GP up.  Back in April Mum had some bloods done and there were several warnings on the print-out.  Although the Doctor dealt with the acute kidney injury (the result of taking ibuprofen for back pain) she’s never once mentioned the fact that Mum is anaemic (haemoglobin 114 when it should be between 115-165, red blood cell count 3.57 when it should be between 3.8-5.8, haematocrit 0.339 when it should be 0.370-0.470 and red blood cell distribution width 16.5% when it should be under 14.8%).  In Mum’s case the anaemia could be down to two things: her chronic kidney disease or she’s low in iron for some reason, both of which are treatable with drugs or supplements.  Anaemia makes you very tired and can contribute to breathlessness and as Mum is already exhausted from heart failure and struggles to breathe due to advanced COPD I’m really angry that this has been ignored.  Apparently she’s been anaemic since last September when she had Guillain Barre and the Doctor has just put it down to being unwell, but for heaven’s sake that was 9 months ago so she’s ordered another blood test to check her iron levels, B12 and other red blood cell related stuff.  Once again, though, if I hadn’t requested a print-out of her results we’d be none the wiser and her anaemia would be going untreated.

We’re still having uncharacteristically good weather here in the north of England so I made myself do some much neglected jobs in the garden, even though I felt like crap, my right hand/thumb/wrist is still painful and I really didn’t want to.   I do feel good for getting it done but would still rather have been taking photos or simply chilling on my swing seat in the sun.  I fucking hate housework.

I found out who the designer of the couture wedding dress I bought was and sent my two pictures to her.  You never know what might come of something like this and I did hear back from her saying she’d love to work with me!  Considering she designed the outfit for the godmother of Pippa Middleton for the royal wedding this is a huge honour, but sadly she’s in London so it’s not going to happen.  However, she is going to use my photos on social media which gets me exposure.

I also had two sales of my photos this week 😀  A friend bought a large mounted print of one of my wedding dress pictures and I sold a large canvas of a local river on my Redbubble page (which desperately needs updating!).  The sales were a god send as I only had £4.65 in disposable income to last me the whole of June so although I didn’t make a fortune at least I can breathe a little bit!

I’m currently working on an image of a pig and needed a car tyre (don’t ask 😉 ), so at 9.30pm last night I legged it over the wall to my neighbour’s farm and…..erm…..borrowed one from a pile he has stacked in his yard.  Then I panicked in case he has CCTV and I was arrested, so if you don’t hear from me for a while I’m banged up 😉

Weekly roundup

My week started off great……….. and ended up in A&E.   I’ve been having way too much fun this past fortnight with the lovely weather, relatively good health and fab days out with friends and we all know that me being happy isn’t allowed so the Universe decided to re-dress the balance.  The Bitch.

Tuesday I had another lovely day out at the seaside with a friend from my Camera Club.  We took a picnic lunch and tootled round taking photos of anything and everything while the sun beat down and the breeze cooled our skin.  Gorgeous-ness.

Thursday I had another idea in my head for a photo in my new wedding dress, so I got my spare room all sorted, wrangled myself into the dress and laced up the corset, took one test photo then went to check it on the screen, caught the dress on the tripod and the camera went a perla landing face down on my wooden floor 😦  Thankfully my £1000 camera body was fine but I smashed the lens to smithereeens.  Bugger and double bugger.  I have accidental damage on my house insurance though so immediately started hunting out receipts for my lens and taking photos as proof of the damage.  I rang the insurance company within the hour expecting to have to leap through burning hoops in order to get the lens replaced and was gobsmacked when the lady on the end of the line was lovely, didn’t ask for any kind of proof or even a photo, and told me a cheque would be put in the post the next day 😀  Mind you, I have had the policy for 30 years and this is only my third ever claim so I’m sure that helped.   I immediately went online and ordered a new lens which should be here by the start of next week.  Phew!  When I am camera-less I feel like I have a limb missing.

The next day, being unable to take any photos yet still enjoying a good spell of health, I decided to get to grips with some long overdue jobs in the house, including a big sort out in my “studio”, aka spare room, which I’d wanted to do for about three years!   I put lots of stuff up in the loft which was stupidly hard work on my own, but I felt really proud that I’d finally tackled it even though every joint in my body was now screaming and my head was totally fogged up with exhaustion.  I stood on the landing with the loft pole to push the loft door back up, got it nearly to the ceiling, the pole slipped and the door came swinging back down……….and smacked me square in the face.  OUCH!!!  I thought at first I was dazed but fine and then I realized my mouth was full of liquid, so I went to the bathroom, bent over the sink and the blood poured out.  Shit, I thought to myself, I’ve knocked my sodding teeth out but thankfully they were all intact and it turned out I’d split my lip right through to the inside.  I applied a cold, wet flannel for a good 10 minutes until the bleeding slowed down then took a look at the gaping 1cm cut on my face and decided I needed to get it looked at.  Gathered my stuff together, got the dog bungled in the car, and off we went into town which normally takes about 12-15 minutes.  Not today though.  Of course not.  There had been an accident on the motorway and all the traffic was diverted, so I sat for what felt like forever all the while dripping blood.  In the end it took 40 minutes to drive six miles, but I eventually dropped Bert off with my parents and headed up to A&E which was thankfully fairly quiet despite the fact it’s the school holidays.  Within a couple of hours the wound had been cleaned and stitched and I have to go back on Weds for a check, bearing in mind I often take longer to heal than a healthy person due to my hEDS.

It’s a shitty thing to have happened but I still feel incredibly grateful that I didn’t break my nose or knock my front teeth out.  Having said all that, I got home dazed, exhausted and feeling a bit sorry for myself and all I wanted was a cuppa, a soothing soak in the bath and to crawl into a clean bed.  Only my cleaner hadn’t been again this week and my bed was minging, so I set about stripping it and putting on fresh sheets.  I then fed the dog, emptied the dishwasher, re-stacked it and then finally had my bath.  It’s times like this that living alone is absolutely and utterly rubbish and a comforting hug and someone to look after me would have been heavenly.

I am so obsessed with my photography that the worst part of both accidents is that I’m brimming with ideas for photos yet am now camera-less and look like the Bride of Frankenstein!  It’s so frustrating, but at least it gives me the chance to edit some existing photos – here is one of the wedding dress I took last week with a back-drop taken during a particularly cold spell this winter.  It isn’t quite finished yet as the perspective is wrong on the wings and there’s something weird going on with the skin on my arm but you get the gist:

They say things come in threes so I’m spending the next week cocooned in bubble wrap, wearing a crash helmet and staying in bed out of harm’s way 😉

 

Weekly roundup

I seem to have had lots of new followers in the past couple of weeks, so “hi” and *waves* to you all, though why any of you want to listen to me rabbiting on is anyone’s guess 😉

The perfect weather, and my as-good-as-it-gets spell of better health, has continued this week and I’ve been doing way too much again.  Monday a couple of old codgers from my Camera Club asked me if I wanted to go with them to the coast on a photography day out and, as it’s been twenty years since I went to the seaside, of course I said yes.  I really enjoyed it and even though I didn’t take any brilliant photos it was still gorgeous to feel the salty, sea breeze on my skin.

Last week I had a phone call from the eye Consultant I saw recently at the hospital.  She’d never heard of Ehlers-Danlos Syndrome so after she saw me the first time had researched it – I was gobsmacked that any Doctor cared that much, cos let’s face it most don’t.  Having discovered the way it can affect the eyes she called me back on Weds to do a few more investigations (which were thankfully all fine) before referring me to a better hospital.  I thanked her profusely for taking the time to look my disease up and it turned out that as she’d read about hEDS light bulbs had gone off for her daughter.  So she quizzed me mercilessly on the symptoms of hEDS and I was happy to fill her in, after which she said she was going to have a word with the Rheumy at the hospital who I’ve seen and is knowledgeable on EDS.  She was only a fairly young Doctor who had clearly had little or no training at medical school on EDS, so hopefully now she will talk to her colleagues about it and the word will continue to spread 🙂

I’ve had a couple of photos in mind which would only work if I wore a dramatic dress, so I’ve been bidding on eBay for second hand wedding dresses.  I couldn’t believe my luck when this week I won a £3,000 couture ex-display dress, never worn, for £40.  £40!!!  So I spent an hour on Friday wrestling myself into it (quite hard to do a full lace-up corset on your own!) and taking pictures of myself in my spare bedroom wearing a long ginger wig.  I was then able to cut myself out and make up a photo from other pictures I’d taken recently.  It’s not often I love my photos but I’m chuffed with this one and might even print it off and put it on my wall 🙂

Editing my photos has been tortuous though as not only did I have a rumbling migraine which lasted for three days I’ve done something to the carpometacarpel joint and/or surrounding ligaments on my right hand.  It’s one of the worst places to have an injury as I’m finding it impossible to immobilize.  I’ve tried my thumb brace and my usual wrist brace but both allow too much movement of the joint 😦  Ideally I need to buddy tape my thumb to completely stop it moving but I have no clue how to do that – any Zebras out there with ideas?!  This is the joint in question:

By the end of the day the pain is baaaad and travels up my whole arm and into the top of my back due probably to nerve inflammation.

My bezzie mate is coming down this aft and we’re going to lounge by the river in the warm sunshine and put the world to rights, so I’m looking forward to that.  First though I need a shower.  I’ve been so busy using my energy for fun stuff this week I haven’t had any left for essentials, but now I smell and my hair is itchy so I have an urgent appointment with a flannel and some shampoo.

 

 

 

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 😉

 

 

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.