The C Word

Which stands for Christmas in case you were wondering 😉  A time of year which often feels like it must be endured, rather than enjoyed, when you’re sick and single.

I’m not going to lie, Christmas is shit when you’re ill, skint and alone.  I love all the twinkle and glitter but when I put my tree up and I’m sat there by the fire watching the lights prettily shine in the dark, oh, how I wish there was someone beside me to share it.   Someone to snuggle up to watching schmaltzy Christmas movies.  Someone to play daft board games with.  Someone to wake up to on Christmas morning who preferably isn’t hairy and licks his own willy 😀 After 23 years of living on my own you’d think it would get easier, but I’m here to tell you it doesn’t.  It’s a bugger.

I thankfully get invitations to go out or to visit friends, but often have to turn them down as I am too unwell or exhausted to even get dressed.  None of my diseases take a fortnight off simply because it’s Christmas.  If anything they often play up more than normal, as I stupidly eat things I shouldn’t and do wayyyy too much.  New Year is positively tortuous, as I hear my laughing neighbours all off out for meals or to friends while I spend yet another night alone in front of the box.  There are times over the festive period that the ache of longing for even a semblance of a normal life is physically painful.

I don’t have a huge amount of money but I’m comfortable and can thankfully pay my bills without worrying.  I don’t necessarily need anything but there’s loads of stuff I’d like, such as camera gear, new boots, more orthotics, some kitchen knives which actually cut food and various other things which would make my life easier and which I never seem to have the money to buy.  Christmas just seems to compound my lack of luxuries.  All those adverts on the telly of shiny new stuff that I can’t afford can get a bit depressing if I let it.

So I have to give myself a good talking to.  I am not homeless or starving and am far from poor, so I try and be thankful for the stuff I have rather than yearning for the stuff I don’t.  I then stay up til midnight for the online Boxing Day sales in the hopes I can still get myself a new studio flash without having to rob a bank 😉 I tell myself that although I am alone at least I’m not spending the day with people I can’t stand, like my partner’s leary Uncle or mind-numbingly dull in-laws.  I am also not arguing with anyone, which was my pattern when I was dating.  My boyfriend would inevitably roll up at my house drunk after going on a bender with his rugby mates on Christmas Eve and spend most of Christmas Day eating paracetomol and looking green to the gills.  I inevitably hated him for spoiling this one special day of the year and felt let down that he could barely touch the dinner the women in the family (it was never the men) had slaved over all morning.

Which brings me to the point that we all think that everyone but us is having some magic, Disney Christmas when the reality is often anything but.  Christmas can be brilliant, fun and fabulous but it can also be exhausting, stressful and disappointing.  It’s no coincidence that January is the busiest time of the year for marriage break-ups due in no small part to the tensions we keep a lid on all year finally erupting.  Children can be demanding and ungrateful.  Women often bare the brunt of the work and can end up resentful and knackered.  And there’s only so much turkey you can eat without wanting to throw up.

So, yes, I am hugely lonely at Christmas, much more so than any other time of the year.  But I am not unhappy.  I shall “treat myself as I would a beloved child” and do whatever takes my fancy.  I shall eat shite, drink fizzy pop and watch box sets of ER, swooning over George Clooney before I knew he was a weirdo commitment phobe.  And it will be fine.

 

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The “demanding” patient

My blog is followed by various medical professionals and when I posted my Blood Test Results this morning I received a pompous reply from a GP telling me the post was inflammatory, being a “demanding” patient gets people nowhere and I didn’t have a clue what I was talking about.  Not one to shy away from criticism I thought I’d post a reply.

1. I’m sick y’know

Possibly this GP doesn’t realize the monumental effort it takes for someone with M.E. and a brain injury, who suffers from dyslexia, to write an entire blog post.  Seriously, I am fucked for hours afterwards.  The fact I now feel the need to write a second post in the same day is going to make me feel shit until tomorrow.  That all my efforts to share my experience in the hopes of helping other people in the same boat as me is met with such lack of understanding is hugely saddening.

I am not inciting other people to act.  I’m simply sharing my thoughts and experiences.  If anyone else finds my experience helpful brilliant.  If not feel free to jog on.

2. Doctor knows best

Until he/she doesn’t.  I was born with Ehlers-Danlos Syndrome.  My hypermobilty had been commented on by dozens of medical experts over the years, all of whom didn’t bother to examine me further or tie together my myriad symptoms, despite the fact they were all huge red flags for hEDS.

My own GP had never heard of the condition, and the Consultant Immunologist who I’d been seeing for over two decades with my M.E. put my widespread pain down to my hypermobility then didn’t bother to investigate the issue further, despite the fact I’d had spinal surgery for a disease rare in children but indicated in hypermobility syndromes.

If I’d left it up to any of the medical professionals I’ve seen over my lifetime I would never have been diagnosed with EDS.  On averge it takes an EDS patient a decade to be diagnosed and for me it took 42 years.   Even then I had to diagnose myself and persuade my GP to refer me to an EDS specialist.  This is due to lack of knowledge amongst GPs in particular and the medical profession in general.  Which isn’t my fault or something I should be blamed for.

When I started passing out after every meal the Gastroenterologist I saw said it was IBS.  FFS!  Because none of his standard, routine tests showed anything I was dismissed from his clinic with some Buscopan.

I have had to become my own expert patient.  I’m sorry the GP who commented thinks that patients know bugger all about their own bodies, tests and diseases but the truth is they often know more than most all of the doctors they see especially when their disease is rare.  If I hadn’t researched mast cell disease and asked my GP for a referral to Dr Seneviratne I might now be dead, because far from having IBS I was having anaphylaxis.

My GP clearly admits she knows zero about my rare diseases, so when she’s not worried about test results which may indicate kidney disease that doesn’t mean I shouldn’t be worried, because I know that mast cell disease can affect the kidneys as outlined in Dr Afrin (world expert on MCD)’s book.  So maybe in a healthy person my results are nothing to be concerned about, but when you bear in mind my pre-disposing factors it’s something which warrants further investigation.  My GP, unaware that MCAD might predispose me to kidney disease, doesn’t know this information so I do need to point it out and ask for further investigation because she’s not going to offer.

If being informed about my own health when my doctors clearly are not, and continuing to seek answers to my non-standard symptoms and test results makes me “demanding” then I guess I’m guilty.  But at least I’m diagnosed which I wouldn’t have been if I hadn’t firmly pursued my symptoms regardless of the fact that my GP wasn’t concerned.

3. Experiences differ between people

I’m sure the experience of the NHS from the point of view of a busy GP is wildly different to that of his or her patients.

I was bedridden with M.E. for nearly a decade.  During that time I lost my hair, speech, ability to eat solid food, had seizures, my hands and feet turned in and I was in extreme pain (to name but a few of my symptoms).  But test results didn’t show anything so I was left, alone, to just get on with it.  I nearly died.

The experiences of the medical profession I had during those 10 years are so horrendous they have left me traumatized and almost phobic about seeing a doctor.  I was neglected, stigmatized, suffered outright hostility, blamed for my own disease, blamed for the fact I didn’t recover, disbelieved and lied about.  This and my experiences of having hEDS and MCAD have hugely coloured my view of the NHS and the people who work therein.  Some of whom are fabulous, wonderful, kind, caring human beings.  And some of whom absolutely are not.  I do hope the GP who commented on my post has watched ‘Unrest’, the docu-film on M.E.  Maybe then he’d understand more my lack of faith in doctors and believing they know more than me about my body.

4.  The drugs don’t work

According to this GP the Spatone I’ve been taking is next to useless, which is a surprise being as though it’s recommended by Midwives all over Britain to pregnant women who can’t tolerate regular iron supplements.  Maybe my ferritin levels have increased from 18 to 46 by magic!  Or maybe it’s the Spatone, cos I certainly can’t eat enough beans to have made such a huge difference baring in mind I feel nauseous much of the time.

I’m now off to collapse in my bed to recover from this bloody nonsense.

 

Blood test results

Having felt rubbish since the start of the year, with persistent and often disabling day-long dizziness, overwhelming fatigue, sleeping like the dead, flattened toe nails and tinnitus, last week I had a blood test to check things like my iron levels, red blood cell health, B12, folate, thyroid and various other bits ‘n bobs.  My symptoms were all indicative of anaemia and being as though I have 5 risk factors for the disease and my periods are now heavier than usual due to the peri-menopause it was a no brainer to me that I’d be anaemic.  Er, think again.

I last had my ferritin (iron) level checked back in April and it was 18ug/L.  The normal range is 17-291ug/L so I was right on the bottom rung of the iron ladder, however because I was still within the “normal” range my GP was unconcerned.  She wasn’t the one feeling like a washed out rag doll, however, so I took a closer look at my vegetarian restricted diet, making sure I incorporated more iron rich foods like beans, nuts, quinoa and lentils with both my lunch and dinner every single day and started myself on some supplements.  Iron tablets are renowned for playing havoc with your stomach and making you hugely constipated and as I already have intestinal pain, nausea and difficulty pooping I opted for Spatone which is simply spring water naturally enriched with easily absorbed iron.  I’ve had zero side effects from Spatone, despite recently taking 2 sachets per day (which is suggested for pregnant women with anaemia) rather than the recommended 1.   Fast forward 8 months and my ferritin level has gone from 18ug/L to 46ug/L which still isn’t brilliant (it should really be over 90ug/L) but is a huge improvement.  Couple that with the fact my B12, folate and red blood cells are bang in the middle of the normal range and my symptoms definitely aren’t down to anaemia, which is good on the one hand but still leaves me with crippling unexplained symptoms.

In the UK we usually ring up the receptionist for our blood results and she just tells us that “everything’s fine” if they all come back within the normal range, however I urge people to actually go along to the health centre and request a print-out of the results.  Mine have been revelatory.  If I hadn’t asked to actually see them back in the Spring I would never have known that although my ferritin was “normal” it was only normal by 1ug/L.  I would also have never seen my kidney (GFR) results, which were accompanied by a warning exclamation mark so were anything but “normal”.  My first kidney test was done back in February and came back at 73mL/min/1.73m2.  The normal range for my age is 90-120 so my kidney function was way off.  I queried this with my GP who again was totally unconcerned and said it’s only a snap shot and maybe I was just dehydrated.  I know that I am never dehydrated because I drink pints of water throughout the day but I had to just leave it at that.  When I had further bloods done in April I asked for my GFR to be repeated and this time it was 82, which was an improvement but still nowhere near normal.  This time my GFR test is back at 78, which is indicative of Stage 2 chronic kidney disease.  How this can be considered “normal” and not concern my doctor staggers me especially when mast cell disease can affect the kidneys and coupled with something else I discovered buried in my blood results.

Magnesium levels are kept within very small parameters by our kidneys and the normal range is 0.70-1.00mmol/L, but my result came back at 1.10mmol/L which is considered to be mild Hypermagnesemia, an electrolyte imbalance, and my result was accompanied by a warning exclamation mark.  There is loads of information online about magnesium deficiency and very little about high magnesium, which is usually only found in people taking drugs high in magnesium (which I’m not) or in the end stages of kidney disease.  The fact that it is a sign of poor kidney function, fits many of my symptoms like dizziness, weakness and sleepiness, and couple with my abnormal GFR results to me rings alarm bells.  My GP, though, is still totally not bothered!  It seems that you only get to see a renal specialist if your kidney function is under 40. I’m sure that if they caught chronic kidney disease earlier and tried to find out the underlying cause and treat that less people would wind up in end stage kidney disease and on bloody dialysis!  There is zero preventative health care here in Britain and it drives me insane.

I’m a very cautious person who tries to manage my diseases using proven scientific measures.  I do worry about all the people out there who put themselves on all manner of supplements and hugely restricted diets without involving their GP and having the effects regularly monitored.  If you’re swigging Gaviscon, eating Rolaids or taking magnesium supplements you really should have your magnesium and potassium levels checked regularly.  Ditto B12, folate, protein and iron levels if you need to be on any kind of restricted diet.  If you are on drugs for stomach acid like PPIs or H2 blockers this can interfere with the absorption of nutrients like iron and B12 so again you should have a yearly blood draw.  I know this is hard to achieve here in the UK where we can’t just ring up and request a blood test so it’s important to be firm with your overworked and stressed GP – it’s your body.

Having said all that I probably won’t do anything about my abnormal results, though I’ll probably request my magnesium and kidneys are re-tested in 6 months time.  If the results remain the same then I’ll battle my GP on referring me to a specialist to find out what’s going on bearing in mind I have mast cell disease which predisposes me to all sorts of potentially serious complications and about which my GP admits to knowing absolutely nothing just as she admits to knowing nothing about my Ehlers-Danlos and the complications of that.

 

Weekly roundup

This week my blog had its 800,000th visitor, a fact which totally blows my mind.  The power of the internet is both awesome and terrifying and the fact I can reach people half way round the world from my bed is gobsmacking.  On the flip side, two spam followers have joined my blog this week.  One is some corporate strategy dipshit and the other is offering me penis extensions.  I am a girl.  If I had a penis, tiny or otherwise, I’d be worried.  This blog is written by someone who is ill for God’s sake – piss off and bother someone else.

As you may remember, I had my dog groomer’s daughter over for a photo shoot the other week.  It was a favour.  The Mum is setting up a pop up shop in the next village and is doing a little art gallery on the walls, so she wanted me to take some pics of her daughter so that she could paint her.  It took me all morning to prepare the room, set the backdrop and lighting up, carry the props into position, make sure my camera was ready (charge batteries, clean lenses and screens), take shots of myself with a remote control to make sure the lighting and camera exposure were right, then spend an hour doing the actual pictures.  I didn’t charge a penny and did the lady 2 large prints for only as much as it cost me to produce them (minus my time obviously).  The shoot went so unexpectedly well I thought it would be great to have the little girl back to do some shots for my portfolio.  I asked the Mum and she said that was fine as her daughter had really enjoyed doing it.  So I spent £20 I don’t have (bearing in mind Xmas is 3 weeks away) on some little dresses.  At 9pm last Saturday night I texted the Mum and we arranged for her to come at 11am the next morning.  I got up early to walk Bertie so that I could get back and set the room up.  Then I waited.  And waited.  And waited.  By 11.30am they hadn’t arrived, so I rang them.  No answer.  I was feeling shittily unwell and to realize that all that effort had been wasted made me furious.  At 12.15 the phone rang and it was the Mum, saying “sorry, I simply forgot.  I hope you weren’t waiting around for us”.   Is she having a bloody laugh?  Does she think you do a photo shoot on a whim with no preparation whatsoever?  Plus we’d arranged it only 14 hours before and she’d forgotten?!  Pull the other one.  This happens to me all the time.  I do stuff for other people despite the fact it makes me poorly but when it comes to me wanting a favour I just get messed about.

Back in 1988 I did a beauty night-class at my local college.  I bought a set of quality make-up brushes which, 30 years later, are starting to fall apart.  I dunno, they don’t make stuff to last these days 😉  So I thought I’d treat myself for Xmas to a new set of quality brushes, not realizing how flaming expensive they were.  At £20 per brush they’d need to be made of gold and unicorn fur, not plastic!  Anyhoo, I finally came across a website which said it sold designer brushes but imported so they were cheaper.  I should have known better but I ordered some.  That was back in September and I have not received them.  Despite trying to get in touch with the company they have ignored me and when I Google searched them I discovered they were bogus, so I’ve had to do a chargeback via my credit card company and report them to Trading Standards.  Do I need this shit in my life?  No I do not, and I’m still without any make-up brushes.

Tuesday I woke barely able to move my head or left arm.  No idea what I’d been doing in my sleep but I’d done something to my neck.  There’s no need for it.

Thankfully my week perked up after that and I received an unexpected invitation out to lunch on Weds by a friend from my Camera Club.  He’s male and 70 but we get on like a house on fire, so I had a very enjoyable all day breakfast followed by a histamine riddled mince pie.

That night was Club and we were getting the results of our latest competition, which had a set theme of water.  It’s not really my thing and I wasn’t expecting to get anywhere, so imagine my surprise when I was placed both 3rd (for the water balloons) and 1st (for my evening rain) 🙂

The water balloons picture involved putting a paddling pool in my spare bedroom, tying filled water balloons to a pole above the pool, then trying to pop them with a pin while simultaneously taking a photo with a remote shutter release.  Which sounds fine until you realize that when you pop a water balloon you instinctively shut your eyes, so I did it all blind 😀  Then afterwards I had a foot of coloured water in the paddling pool with no clue how I was going to get rid of it.  The rain picture involved me being outside in a flimsy dress, in October and spending an hour under a freezing cold hosepipe. Never again my friends, never again!

Thursday I went into town for my blood test – results due next week.  I then went to do a bit of shopping, calling in at the local deli for my yeast-free bread which is put aside for me every week.  Only when I got to the counter it wasn’t there.  “No worries, I’ll just get 2 off the shelf” I said to the assistant, and only realized as I walked to get the bread that it was Thursday and I don’t collect my bread on Thursdays I collect it on Mondays.  So I just carried on walking, slinking out of the shop with my head down 😉  I then went to get some dog food from Pets At Home.  I remotely opened my car with my key fob on the way back to the car park, but when I tried the handle the door wouldn’t open.  Exasperated I yanked the handle really hard but it wouldn’t budge, so I kicked the car tyre in frustration.  Then I realized the tyres looked different, so I went round to the front to read the number plate.  Er not my car.  No.  My car was parked 5 spaces away.   There are days I’m just not safe to be let loose in society 😉

The reason for my confusion became apparent on Friday when I woke with a stonking migraine.  So I had a super day curled in the foetal position and wishing I could cut my head off with a blunt knife.  Saturday was also a right-off as the nausea, dizziness and head pain lingered.  There may be hope on the horizon for migraine sufferers, however, in the form of a self-infejectable drug which claims to prevent migraine attacks.  See this clip for info.  Whether I’d be brave enough to try it however, knowing how my mast cells respond to drugs, is open to debate.

Today I am going up the lakes with my bestie for lunch and a smooch round the garden centre, filled with all things sparkly and Chrismassy.  I love Christmas and get hugely frustrated at the limitations placed on me by my diseases and the fact I can’t join in with the festivities as much as I’d like to.  Every year I promise myself I won’t do too much and be so ill I spend the whole of January in bed like a rag doll, and every year I can’t help myself.  I like being invited out, spending time with friends and eating things I shouldn’t.  I just accept that I will have to pay for the privilege!

 

Types of Fatigue

Doctors talk about “fatigue” like it’s a single entity and it is listed as a symptom in dozens of diseases and conditions like we all are experiencing the same problem, when we most definitely are not.  It’s a bit like headaches.  You can get tension headaches, concussion headaches, hangover headaches, seizure headaches, migraines and hormone headaches to name but a few, each with different causes and characteristics and needing different treatments.  Yet for some reason fatigue is treated like it’s the same for everyone regardless of cause, when it actually differs widely and needs various management and coping strategies.

Fatigue is a symptom of 4 of my diseases and conditions (menopause isn’t a disease though it sodding well feels like one some days!) so I thought I’d have a go at explaining how it differs for me and how I manage each type.

M.E. Fatigue

The term “fatigue” is so inappropriate when trying to explain this M.E. related symptom that I hestitate to use it, but so far I haven’t been able to think of a better word so it will have to do.  M.E. fatigue is the easiest for me to recognize.  It is totally unlike the normal “tired” or “exhausted” that everyone feels and much more like the fatigue you get when you’re poorly.  My body feels poisoned and ill, a bit like the feeling you get just before you vomit.  That weak, clammy feeling where the blood drains from your face, you are green to the gills, your legs buckle from under you and you end up lying on the bathroom floor groaning, unable to move or think as the weakness and sickness consumes every ounce of your being.  Only it’s like that 24/7.  And it’s not a fatigue that you can push through, at least not for any length of time.  I just hit a brick wall and it is absolutely impossible to carry on.  If I try I either collapse, faint, have a seizure and/or end up puking.  Depending how severe your M.E. is, this brick wall can come about after walking to the shop and back, talking on the phone for 15 minutes, taking a shower or simply sitting upright to eat a meal.  The fatigue doesn’t just affect the muscles, it also affects the brain which feels like it’s permanently stuffed with cotton wool.  Any act of thinking, eg. writing a shopping list, reading a book or making a decision about what to eat for dinner, robs the brain of energy and makes it even more fuzzy to the point where it can be physically painful and thought becomes impossible.

It is not a fatigue which responds to rest.  You can sleep for 20 hours and wake still feeling utterly and absolutely wiped out.  I have felt completely wiped for over two decades and not for a single second of that time have I ever feel well, rested or energized, either mentally or physically.

The fact that M.E. was re-branded Chronic Fatigue Syndrome is an absolute travesty.  M.E. has nothing to do with fatigue, at least not the fatigue that healthy people recognize.  The word “malaise” is much more appropriate, though I still think we need to invent a word which describes the poisoned, weak, collapse which epitomizes M.E..  I even take issue with “post-exertional malaise” which makes it sound like you only get symptoms after activity, which definitely isn’t the case.  I have felt weak, poisoned and ill every second of the last 23 years.  Yes activity makes it worse, but the absence of activity doesn’t mean the absence of symptoms – if only!  When I see people online query if they have M.E. because they are chronically tired I want to scream.  If being fatigued was the only diagnostic criteria for having M.E. half the world’s population would have it.

The only way to manage the fatigue of M.E. is to lie down.  Sitting won’t cut it.  At the severe end of the spectrum you have to lie down every second of the day and at the more mild end of the spectrum you have to lie down for portions of the day, but if you can remain upright for the entire day I’d query whether you have M.E. at all.  Having “rested” you don’t feel recovered, you just feel like you’re not dying or about to pass out, which is a bonus.

Ehlers-Danlos Syndrome

The fatigue associated with my hEDS (and I can only speak for myself) is a totally different kettle of fish.  It’s more akin to normal, if exaggerated, fatigue.  Imagine you’ve just climbed to the top of Ben Nevis and back.  Everything is hurting and aching, your muscles feel strained and overworked, stiffness is setting in and you’re desperate to collapse into a warm bath or onto a soft couch.  That’s what my hEDS feels like, only every second of every day.  There is no ill feeling or feeling of weakness, seizure or collapse, and I can push through the fatigue if I really need to although it does get to a point where the pain is so bad I have to stop whatever I’m doing.

Rest does help and in particular the avoidance of activity.  It doesn’t make the pain, aching and stiffness go but it becomes less severe.

Some people with EDS complain of brain fog but this isn’t part of the diagnostic criteria.  As I already have brain fog from my M.E. I have no idea if I’d have this with EDS or not if I didn’t have M.E. too.  I do think that some people with EDS may also have M.E. and go undiagnosed and that some people have brain fog due to POTS or some other type of dysautonomia rather than EDS per se (POTS & dysautonomia are common secondary symptoms of both M.E. and EDS).

Managing this type of fatigue requires planning and pacing, including switching to different kinds of activities and not doing anything repetitive for long periods of time.  I find it the most simple to treat of all my conditions as it does respond to rest and careful pacing, making the fatigue easier to manage although obviously not cure.

Mast Cell Activation Disorder

Again I can only speak from my own experience but the only time I have fatigue associated with my MCAD is when I’ve had an anaphylactic event.  The fatigue which follows makes me very weak and drained and can sometimes make me sleepy while other times not.  I absolutely have to lie down, often for several hours, and it can be days or even weeks (depending on the severity of the anaphylaxis) before I return to some semblance of normality.

I don’t really get brain fatigue with MCAD.  After an anaphylactic event I feel totally spaced out and my brain feels kind’ve battered and bruised, but not foggy like with M.E.  It’s hard to tell to be honest, because having anaphylaxis completely buggers my M.E. up and causes a flare which can last for months, so then it becomes impossible to tell which symptom has been triggered by which disease.

The only way of managing this fatigue is to rest in bed until it passes.  Antihistamines seem to have zero effect.

Peri-Menopause

I am in year 6 of peri-menopause.  For the first 5 years I didn’t notice any significant fatigue but this year I’ve been poleaxed by it.  It came on out of the blue in the new year and literally overnight I felt like I’d been coshed over the head.  Having researched this online it is fairly common and the name given to this symptom of menopause is “crashing fatigue”.

It’s different again to the fatigue mentioned above and feels much more like I’ve been sedated.  My eyelids feel like cement and are permanently down to my kneecaps, my body feels relaxed and heavy and I just want to sleep, sleep and sleep some more.  However, having slept for 9 hours I wake feeling no better and could cheerfully go back to sleep only 2 hours after getting up.  And then again in the afternoon.  Having slept half the day away, however, I still can’t keep my eyes open past 9pm at night.

This fatigue definitely affects my brain not to mention my memory!  But it’s not so much foggy as sleepy and confused, a bit like I’ve been woken from a deep sleep at 3am.

I haven’t found anything which alleviates my menopause fatigue and can only hope it settles once I’ve gone through The Change and come out the other side.

Having written this blog post I’ve realized how difficult fatigue is to explain and how easily it can be misunderstood by healthy people who have only ever experienced normal tiredness.  I’ve never been asked by medical staff to explain my fatigue, how it feels or how I manage it – they just hear the F word and assume it’s akin to being tired all the time, when it’s anything but.  I’ve thought for a lonnnng time that we need a new word to explain the malaise-like weakness experienced by M.E. patients, so that it can be differentiated from other types of “chronic fatigue” and more importantly from normal fatigue, so if you have any suggestions let me know!

 

Weekly roundup

Oh my giddy aunt I am so tired.  Not ME tired, cos that’s not tired it’s ill, but simply zonked.  I can sleep all night, have my breakfast and want to go back to bed.  I want to nap after lunch and before tea and am asleep by 9pm every night.  My brain feels constantly sedated and my get up and go has got up and gone.  It’s not necessarily a bad feeling, because being sleepy and chilled is really rather pleasant, but nothing much is getting done in the chores department which is a worry with Christmas only 3 weeks away!

My blood test for ferritin and other stuff is due to be carried out on Thursday though Lord alone knows when I’ll get the results.  I went to Holland & Barrett today and bought some different iron supplements so will start those as soon as I’ve had my bloods done.  I flippin well hope they help because this is ridiculous.

Since my Mum’s Guillain Barre her legs have gone weird.  They are like a pair of tree trunks down to about mid calf level and her knees have gone all lumpy.  She went to see her GP about 10 days ago, who was stressed and running late and simply didn’t want to know.  She fobbed Mum off by saying that it’s just because she isn’t walking much and when she’s exercising more it will settle.  But I’m not convinced.  To me it looks like lipoedema/lipedema, which has nothing to do with how much you exercise and everything to do with your lymphatic system (and possibly collagen!).  At the start of this week Mum developed a blistery looking rash on both knees which I think is lymphatic fluid leaking into her skin, so this time I rang the doctors myself and made an appointment to see the practice nurse.  I knew she’d be clueless as to what it was, but also knew that if I suggested it might be lipoedema I might be able to persuade her to refer Mum to the lymphoedema clinic which is exactly what happened.  So we’re now just waiting for an appointment to come through.  If lipoedema isn’t treated early on you can end up with serious issues and legs which look like an elephant.  My reason for mentioning all this is that lipoedema is usually hereditary and associated with joint hypermobility, with 50% of lipoedema patients in one study scoring 5 or more on the Beighton Score – who would’ve guessed!  There are several diseases linked to hypemobility which are largely ignored by researchers in the EDS field and my poor Mum seems to have a few of them.  Dercum’s Disease, Lipoedema and Dupuytrens Contracture immediately spring to mind.

Inbetween my bouts of snoozing on the settee I managed to put my Xmas tree up.  I luuurve my Xmas tree.  It’s an artificial feel real fir which came complete with 250 lights.  All I have to do each year is take it out of the cupboard, stand it in the corner of the lounge, plug it in and it’s good to go (I even leave the baubles on!).   There’s nothing nicer than sitting in front of the fire with the twinkly Xmas tree lights on and snow falling outside.  Actually, that’s not true.  What is nicer would be sitting in front of the fire with the twinkly Xmas tree lights on watching the snow fall outside snuggled up to Hugh Jackman on the couch, but I’ll have to make do with Bertie instead 😉

Yesterday I was invited out to an Hotel in town for lunch by my neighbours as a Christmas treat, being as though they are going up to Scotland over the holidays so won’t be here.  Originally they were going to ask my parents too, but I explained I was taking a break from them at the moment and they were still kind enough to take me out which was lovely.  I had veggie lasagne, which contained aubergine, tomato sauce and cheddar cheese, which won’t have done my hives any good whatsoever but it was sodding gorgeous and I enjoyed every histamine riddled mouth full, even if I haven’t stopped sneezing since!

 

 

 

 

Love is a verb

I often find people bewildering.  Maybe I’m wired wrong or am just naive but I struggle to make sense of a world in which people say one thing then do the complete opposite.  On a purely personal level as a child who lived in the midst of my parents volatile marriage you receive very mixed messages from people who claim to love you yet keep you in an unhealthy situation which fundamentally changes who you are as person, predisposes you to mental health issues, warps your sense of love in the process and affects all your future adult relationships.  Call me daft but that’s not any kind of love that I can get my head around, particularly from the very people who are supposed to protect you.

The last time I spoke to my biological Father was in 1989.  I was getting married and had asked my Step-Dad to give me away, though had invited my biological Dad to the wedding.  My bio-Dad was really angry and said “but you’re MY daughter and I love you” to which I replied “if you love me so much how come you haven’t been to see me since I was 7 years old?  You’ve only met my fiance once and that’s because we came to see you.  You’re not paying for the bloody wedding my Step-Dad is.  He’s the one who came with me to choose dresses and venues and you don’t even know who my bridesmaids are let alone have met them.  Yet you still think you should be top dog on the day?”  He never spoke to me after that, and neither did my entire paternal family.  His version of “love” and my version of “love” were obviously very different.

I’ve had several long term partners over my lifetime.  All of whom either flirted outrageously with other women or were actually unfaithful.  But apparently they “loved” me too.  I would have thought that when you love someone you want them to feel special.  To feel secure.  To feel like they are the most important person in your life.   Not to feel like they’re second best to some bint you just met in the pub or the receptionist at work.

When I was having the talk to my Mum the other week about her drinking she said to me “but I love you”.   To which I replied “I’ve screamed at you and begged you to stop drinking but did you even ring the doctor and ask for help?  Did you try in any way, even though you knew the stress it was putting me under?  No!”.  I’m not sure you can love your child then hurt them so badly through your actions that you make them ill, as she has done to me.

Have you ever watched Jeremy Kyle or Jerry Springer?  Couples come on where one or both have been cheating and after half an hour of hurling hurt and abuse at each other they’re asked why they’re still together and they invariably say “cos I love him/her”.  Or parents who have fucked up their kids so royally they’re on Jeremy sodding Kyle yet still have the cheek to say to them “but you know I love you!”

The L word is currently a bit too trendy.  We say it at the drop of a hat.  I watch ‘Keeping up with the Kardashians’ and they say it 5 times before they put the phone down and they’re only talking to the housekeeper 😉  But love is a verb.  It’s a doing word.  It requires action, committment, thought and intention.  It is honest, tender, supportive, encouraging, safe and often selfless.  Most importantly you can’t claim to love someone then do something to hurt them.  It’s a contradiction in terms.