Tag Archives: Ehlers-Danlos Syndrome

Weekly roundup

I did something exciting this week.  My great-gran, my gran, my Mum and I all have an Essential Tremor and last year Mum and I applied to take part in the world’s largest study on the disease.  We initially had to fill out a detailed questionnaire and to be honest I thought they’d exclude my Mum because of her drinking and the amount of tablets she takes and me for the fact I have several other diseases, but after waiting for several months we found out we had been accepted into the trial.  So we were sent a prescription for a blood draw, along with phials and a pre-paid Fed-Ex envelope and on Tuesday we had our blood taken at our local NHS health centre (great they agreed to do it for nothing!) which we shipped off to France to be gene tested.  The actual trial is being done in Canada but I think anyone applying from Europe will send their blood to France who will forward the results to Montreal.  My Nan’s and Mum’s tremor was so bad by the time they were 70 they couldn’t write their own name so researchers have 20 years to find effective treatment so that I don’t suffer the same fate.

I’ve made a new friend at my Camera Club.  She’s absolutely lovely and very kind hearted, so we had lunch together this week and talked endlessly about all things photographic.  I know I bore non-photographers senseless with my hobby, so it’s nice to have someone to talk to who shares my passion.  It’s incredibly difficult to make new mates when you’re largely housebound and meeting new people was one of the reasons I joined my Camera Club, so after going for 4 years it’s fab that I’ve finally clicked with someone although as people we’re very different.

Thursday I went with my Dad to see the spinal consultant about his leg stiffness and weakness.  Despite finding several bulging discs and some spinal stenosis on his MRI scan the Doctor wasn’t concerned and said he’s definitely not a surgical candidate.  So he referred him for physio and that was that.  My Dad already had a physio appt for the next day and the physio was also unconcerned.  He just told him to walk as much as possible and dismissed him from the Clinic.  I’m not sure how walking, which my Dad already did loads of, is going to help spinal stenosis so I felt disappointed that he’s basically going to receive no help.

My Cleaner (who also walks my dog two days a week) has gone down with a lergie, so hasn’t been this week.  My house was minging so I had to clean it myself as best I could on top of taking the dog out in the snow.  It’s typical it coincided with my period week so I was feeling pretty rough, not least due to a three day migraine and a fainting spell brought on by stupidly low blood pressure.  It’s no fun having to go out in a freezing winter blizzard literally 30 minutes after you’ve passed out and thrown up and feel so weak you can hardly put one foot past the other.  Bertie didn’t care though – he loves the snow 😉

Speaking of The Curse I had only my second ever totally-pain free period in 38 years, hurrahhh!  I’d been feeling achy and grotty for a few days beforehand but when I actually started there was zero pain, when usually I’m in bed with two hot water bottles feeling physically sick it’s so bad.   To think that most women have periods which are that easy is mindblowing and if you are one of those women you have no idea how lucky you are.  I have been crippled every four weeks since the age of 11 due to endometriosis and adenomyosis and my periods have felt like a form of torture, which is why I’m so desperate for them to end.

Thursday I’d arranged with a women in the next village to photograph her daughter.  I was doing the shoot for free in return for using the photographs in competitions and was also giving her 2 free mounted prints, which is a good deal by anyone’s standards.  We’d arranged it in December but she didn’t turn up, telling me she simply forgot even though we’d only spoken about it 14 hours earlier, and it’s taken her this long to ring me to re-arrange.  So I spent an hour setting up the studio and gear at 5pm, my worst time of day when I’m usually in bed, then I waited for them to arrive.  And waited.  And waited.   You guessed it, she didn’t turn up again and I haven’t heard a word from her since.  She knows I’m ill and I’ve no idea how she has the gall to be so to be so rude and dismissive of my time and energy.  She’s shot herself in the foot though because she also clips my dog every 6 weeks and if she thinks I’m paying her to do that ever again she has another think coming.

Unrest is being shown tonight at my local cinema.  I downloaded it on iTunes the day it became available so have already seen it but my best friend, who’s had ME for 18 years, hasn’t so I asked if she wanted to go and she said no.  She has no interest in the film whatsoever which just goes to show how differently we all cope with chronic illness.  There is no right or wrong way.  Everyone’s experience is different.  Everyone’s needs are different and we should be allowed to react to our situation in our own unique and individual way.  Whatever gets you through the day.

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Weekly roundup

This week seems to have passed in a bit of a tired blur.  Bloody hormones, I do wish they’d bog off and leave me alone.   I type this with stomach ache, back ache, nausea, weariness, a weird head and a general yukkiness all because my period is imminent.  Knowing that the end is in sight, yet not quite being there, is so frustrating.  Pleeeease Menopause hurry it along so I don’t have to go through this crap every month.

My Uncle died on Friday, though it was expected and he was already in hospital.  It’s sad, but he’s suffered with awful ill health the past couple of years none of which was curable so even his children admit it’s a blessing. He’d had a long, healthy and happy life – you can’t ask for more than that.  It’s the Dad of my cousin with breast cancer, and to be honest I’m secretly pleased he’s passed away now so that she can bury him before her surgery at the start of February and then concentrate on getting herself well.

Despite feeling relentlessly rubbish I crossed something off my Bucket List this week.  I saw a Starling Murmuration up close and personal high on the Pennine fells.  OMG it was breathtaking.  It started with about 20 birds in a circle in the sky and within 5 minutes a thousand birds had appeared out of nowhere.  They danced and swooped almost silently, creating mesmerizing patterns in magical unison, and at one stage they were right above me so low I could have almost reached out and touched them – good job none of them needed the loo or I would have been pebbled dashed!

We were back at Camera Club on Wednesday night after our Christmas break and it was the judging of our annual Millennium Trophy competition, in which I came a respectable second.  The theme this year was ‘a panel of three’ so I tried something a bit experimental by simulating under water pictures.  The reason the judge gave for me not actually winning was that he didn’t like the fact the middle and right photos were dark at the bottom.  I was trying to convey the depth of the water but he thought it was unnecessary  – what does he know anyway 😉


As I’m aging, and as people around me die, I’m increasingly aware of how precious life is and how short.  Having been so ill all these years there is a probability that I will not live as long as if I’d been healthy and I have an urge to make every day count, so I’ve been looking for goals to set myself for 2018.  But they have to be things which don’t put me under pressure, things I enjoy and things I can physically achieve.  My first is to try for my next photographic distinction in November, which I think I’ve mentioned previously, and my second is to write more of my book which was shelved last year in favour of my photography and due to the health issues of my parents.  It’s tortuous going as I can only write one paragraph at a time, and then only on the days when my brain is clear enough, but I’ll keep plugging away because I’m determined to finish it and tell my story.

I received an email on Wednesday morning from the Lottery people.  “We have exciting news about your ticket.  Log in to your account as soon as possible.”  OMG I’m rich.  RICH!  So I log in with heart hammering and hands shaking……………to discover I’d won £4.30.  Guess I won’t be buying my own tropical island or hiring my own Chef any time soon then!

Weekly roundup

2018 has not got off to the start I’d hoped.  I wish I had a nice, happy, positive roundup post for you but sadly I’ve had a shitty week.  On New Year’s Day I had an anaphylactic reaction to the Famotidine (H2 antihistamine) I’ve been taking for my severe GERD (stomach acid).  It had been coming on for a couple of months, with anxiety, palpitations and muscle spasms after taking the tablet, but I’d been trying to ignore it in the hopes my mast cells would settle themselves down.  They refused and finally gave up on the drug last weekend.  Bugger.

My reflux is really bad and the pain of having my body’s equivalent of bleach eating away at my stomach and oesophagus day in and day out honestly makes me suicidal.  My nausea is also off the Richter Scale and my appetite has totally vanished.  Not to mention the appalling taste of battery acid which I now have in my mouth every second of the day and which burns my skin and tongue.

I also think the H2s have been helping with other things, such as muscle spasms and brain fog – I certainly feel much more spasmy since I stopped taking them and very foggy headed.  After all these years I am so sick and tired and being sick and tired I can’t even tell you, and spent the first few days of 2018 wishing I could have a massive heart attack in my sleep and not wake up, but that hasn’t happened so I’ll just have to find a way of coping with the symptoms.

I’ve now tried all the H2 drugs available and, while my body tolerates them for a year or so, eventually my mast cells throw a hissy fit and I become allergic.  I have no fucking clue what the problem is but it’s the same with any drug I take, no matter what it is.  So, yes, I could now progress to trying PPIs but every single day I would be worried about anaphylaxis – I either live with the pain and nausea or I live with horrendous anxiety.  Super.

To add insult to injury whatever I did to my neck in my sleep before Christmas is no better.  I’d hoped I’d just pulled something and it would settle but 3 weeks on it’s still hugely painful every single time I move my head or arms. I can’t be arsed seeing the Doctor (assuming I could get an appointment this side of Easter) as they would want to prescribe painkillers I can’t take or physio I can’t tolerate, so I’m just doing the usual icing, heating and spraying on Ibuleve gel (I can’t even reach to give it a good rub as it’s too painful to move my arms).

I am not a happy bunny and the week has not held any saving graces.

As if things weren’t bad enough, my Dad had some routine bloods done before Christmas in connection with his leg pain and weakness and the results showed that he has a low lymphocyte count (a type of white blood cell) and they also found kappa paraprotein.  There can be various reasons for this but tomorrow he has to take a urine sample in which will be tested for Bence Jones protein which detects blood cancer, so naturally we will be worried until we know the results.   At his age it is much more likely he has Monoclonal Gammopathy of Undetermined Significance (MGUS) and will just need to be monitored as statistically 1% of people with MGUS develop cancer each year, but it’s still something we didn’t expect and has come as a bit of a shock.  Luckily for my Dad he is totally clueless as to what’s going on and Mum and I haven’t discussed the possibility of cancer with him – it’s pointless worrying him (and due to his dementia he gets super anxious about the slightest thing) until we know more.

The only nice day I had this week was Thursday, when I made the journey through to the city to see my best mate.  She has been having issues with her hands which swell up and give her fingers like sausages.  Her skin is also dry, kind’ve lumpy and eczema like and no-one is quite sure what’s going on.  She had a scan which showed virtually all her finger joints were swollen, but her arthritis blood markers are all normal which is odd.  Anyways, on Thursday she had been booked in for allergy testing but they rang the day before to cancel it (for the second time) due to the crisis which is going on in the NHS, which left her day open so that we could have a catch-up.

Not wanting to sit in the house all day today on my own and dwell I’ve arranged for my folks to have Bertie for the morning and I am taking my hide down by the river to try and photograph a pair of Dippers I’ve spotted recently.  It’s bollock freezing cold, so I will need to be well wrapped up and have various heat pads secreted about my person, and it’s not going to be easy when I can barely move my head or left arm but it will pass the time.

Speaking of which I must get up, dressed, take the dog out, through to my parents and then get myself settled down by the river.  Or at least I would if I could stop sneezing.  I have been having a massive sneezing fit for the past 30 minutes, my nose is running like a tap and I’ve already gone through 2 man-size cotton hankies since I got up.  I swear if I’m starting with a cold it will be the last straw.

Aging, hEDS & Invisibility

I’ve rambled on a bit in this post, so you might need a brew and half an hour to spare 😉

As I’ve mentioned before on my blog it’s disappointing (I’m being polite) that there is virtually no information on the effect of aging on the hEDS population, despite the fact we’re all going to get old.  Quite why the over 50s are ignored when it comes to the management and progression of the disease is baffling because if we knew why some people’s illness progressed well while other’s progressed badly we’d know how effective management in younger adults actually was, but it still seems to be something none-one wants to explore.

According to the 2017 guidelines (known as nosology – why can’t plain english be used instead of medical jargon, the EDS charities need to improve on that) there are 3 phases to hEDS:

  • the hypermobility stage
  • the pain stage
  • the stiffness stage

though as far as I could determine this information is based on a pilot study of only 21 people, so why it made it into the new guidelines and is now relied upon by clinicians as fact is a bit of a  mystery.

Although I’m in agreement that, for most people, there are stages to having hEDS the 3 stages listed above don’t really tally with my illness experience.  In particular there needs to be a ‘menopause’ stage because there is overwhelming anecdotal evidence that many women don’t even know they have hEDS until they hit their 40s and their hormones begin to wane (I appreciate that men get hEDS too and their illness experience will be totally different).

For me, I had few symptoms of hEDS until I reached my late thirties.  Note I said “few” and not “none”.  I’ve had gut symptoms my entire life and I started having back pain at the age of 11 which resulted in surgery when I was 16, though it sadly didn’t cure the pain which has been ongoing ever since.  But on the whole, I was in the hypermobile stage until I was around 36.

For me the pain stage didn’t follow the hypermobile stage.  Nope, I skipped that and went straight to the stiffness stage.  Around my late thirties I noticed that my ankles were stiff in the mornings, to the point where I could barely walk to the loo.  Thankfully after an hour or so they loosened up but this was the first indicator that there was something wrong (I had no clue I had EDS at the time).  My back also stiffened up and I went from someone who could do backflips despite the ever present pain to someone who couldn’t bend to put her socks on virtually overnight.

At around the same time I was emerging from my 10 bedridden years with M.E. and starting to be more active.  It was then I noticed chronic, widespread pain.  It wasn’t joint pain, more an overall muscle pain which felt like my ligaments were tearing at even the smallest of daily tasks.  My fingers, wrists and elbows in particular burned constantly.

By the time I was 41 my feet and knees had joined in the pain party.  My neck was so stiff I couldn’t turn it to reverse the car and the range of movement in my hips had reduced down to 30% on the right side and 10% on the left.  When I suddenly starting sub-luxing my shoulder and jaw in my sleep I knew something other than M.E. was going on and fought for my EDS diagnosis.

Despite all the stiffness and pain, however, I remained hypermobile in my peripheral joints.  I can still touch my nose with my tongue, do the reverse Nemaska, bend my fingers to 90 degrees and do all the other party tricks I always have.  My hips, neck and back are a different kettle of fish, though, and the range of movement in my spine diminished rapidly the second I hit 40.

For me, the stiffness and pain stages happened simultaneously and I’m as certain as I can be that they arrived because I was entering peri-menopause.  There is an urgent need to study women with hEDS in their 40s because there are hormone drugs already on the market which might help stave off the deterioration which seems to happen when women reach peri-menopause.  The physio given to younger women simply doesn’t work when you’re middle aged and I find it infuriating that all the management advice is aimed at children and younger adults.  My muscles and ligaments have changed beyond all recognition as I’ve aged and there is a dire need to look at why and how we can best manage EDS in the middle aged and elderly.

I am now 50 and in the late stages of peri-menopause.  When I’m resting my pain levels are fine, apart from my back which hurts no matter what I do, but the second I start to do anything the burning and stinging in my muscles starts, consequently I can’t continue activity anywhere near as long as I could a decade ago as the pain simply becomes too much.  My stiffness has also ramped up a notch or ten.  Far from being confined to certain joints it’s now widespread and there are days when I can barely move first thing in the morning.  My body doesn’t loosen up anywhere near as quickly either and the stiffness lingers throughout the day.  I have to sit to put on socks and shoes, can barely move my head left or right, can’t chop vegetables, struggle to put on jumpers and walking the dog is like climbing the north face of the Eiger in terms of strain and effort.  I “uuuumpf” when I get up out of the chair and can crouch down to pick something up off the floor but can’t get back up again.  I literally have the body of an 80 year old.  Scratch that – my Dad is more supple than me and he is 80!

The only other information I could find about the phases of hEDS came from the UK’s Royal College of Physicians and states ” The final phase is the emergence of psychosocial sequelae such as anxiety or depression, obesity (often associated with comfort eating), work incapacity, isolation and despair. At this stage, there is often a downward spiral of loss of mobility, self-efficacy and self-esteem as the quality of life diminishes” though there is no citation or link to the research on which this statement is based.  Where is the hard data which shows that as we Zebras get older we all become depressed, obese and live in despair, because if that information isn’t available the Royal College should be ashamed of themselves for putting this crap out there.  For a start menopausal women tend to gain weight even among the healthy population (as do men over 50), so unless they can demonstrate via well-controlled clinical studies that weight gain is solely down to the progression of hEDS it is irrelevant, and for a second thing women tend to gain self-esteem as they age not lose it, it’s one of the few perks of getting old!  My body may have fallen apart during my 40s but I’m happier than I have ever been and have more zest for life, not less.  I’m so appalled at the statements made in this piece of mis-information I can barely bring myself to include it, but if this is what our health professionals are reading and basing their views on we need to know about it.  It’s a shame really because the article is otherwise sound, if now a little dated.

Going slightly off topic, the UK hypermobility charities are currently fundraising to research the effect of diet on the symptoms of hEDS and hypermobility spectrum disorders and I admit I am not happy.  We don’t even know the basics of these conditions, so to look at food intake as a means of treatment feels like we’re putting the cart before the horse.  There is no epidemiological information on connective tissue disorders (CTDs), ie how common they truly are in the general population, the ratio of the sexes, at what age diagnosis is obtained or anything about outcome.  We have no clue about progression, or how far the family link extends.  We don’t even test adequately – all people with suspected connective tissue disease should be gene tested, not least to rule out other types of CTD or Marfans’s Syndrome, and this data put in a bank for study – how else are we ever going to find the gene responsible for hEDS?  It’s this basic kind of information which forms the building blocks for research into any disease and data researchers often need when studying illness.  No food is ever going to cure my spinal stenosis or my dental overcrowding, my hernia or my genetic predisposition to Osteoporosis.   It also doesn’t help us understand why many people with hEDS also have mast cell disease, POTS or M.E., or why puberty and the menopause affects sufferers so profoundly, information much more vital and fundamental to our knowledge of EDS in my very humble, but hugely invested, opinion.  For the estimated 10% of us Zebras with MCAS, and who are usually on a restricted diet, altering the foods we eat may be impossible in any event.  Yes we need to look at treatment but only once we have a proper grasp of the disease, its incidence and progression.  Which isn’t as hard to do as you’d think.

I remember back in the late 1990s when very little was known about M.E. and severely affected  patients were completely ignored, Action for M.E. (Britain’s 2nd largest M.E. charity) sent out a survey with its regular magazine to all of its members and received approx 2,300 replies.  The results led to a report called ‘Severely Neglected: M.E. in the UK’ which was the largest ever survey done on the disease.  It turned much of the information ‘out there’ on its head, made a massive impact on our understanding of the prevalence and impact of severe M.E. and became hugely influential when NHS Clinics to treat patients were eventually established.  Over the last two decades, the ME Association have also regularly sent out questionnaires with their quarterly magazine on a wide range of topics, and run a monthly quick survey on their website for anyone with the illness to fill in not just members, all of which have helped our understanding of M.E.   Surveys aren’t difficult to do, although collating the data is time consuming, and I really don’t see why the EDS charities don’t do something similar – at least then we’d know some basic information, such as the percentage of men v women, how many people are receiving no treatment, what treatments people had found effective, progression and if ethnicity is a factor (which might help in the quest for the hEDS gene).

It appears to me, and obviously this is only a personal opinion and observation, that the EDS world shies away from asking the hard questions and I’m not quite sure why that is.  It’s great that children are being diagnosed with hEDS sooner, but appalling that older people are still being completely ignored despite the fact we are often at the more severe end of the spectrum as our bodies age and naturally deteriorate.

I’m fed up of being ignored.  I was ignored as a severely affected M.E. patients for years, as the emphasis was put on those at the mild end of the spectrum because they were well enough to campaign and be more vocal.  I’m totally ignored as an MCAS patient, receiving no monitoring or treatment whatsoever.  As an older person with hEDS I’m also ignored, for reasons I can’t quite work out.  And the fact I live in the north of England (by which I don’t mean Manchester, there is life beyond!)  with any of these diseases means I might as well not exist.  I can’t name one single EDS event which has taken place north of Birmingham and anyone living in northern Ireland or Scotland must feel completely invisible, a situation which is simply unacceptable.

 

 

New Year Roundup

I know some of you are wondering how the situation is going with my parents, so I thought I’d do an update.  My Mum kind’ve thought that I’d have a blow out, take a week to get over it and everything would go back to normal but I simply can’t do that and would have some kind of breakdown if I tried.  So things have definitely changed and I have taken a huge step back from my parents.

I told them both that I love them and that I will take care of them, but I am not visiting socially four times a week like I used to – not for a while anyway.  I told them that my Mum’s drinking,  listening to their constant bickering, my Mum’s bitching and bullying, and never knowing what kind of mood they’d both be in was making me physically and mentally ill and I was no longer prepared to deal with it.

I used to ring them every morning at 9am to check how they were and what they were doing that day, but I’ve stopped the phone call.  If they need me they know where I am.  My Mum still rings me most days for a chat, which is lovely, and initially I felt really guilty that I wasn’t checking up on them however I know that my step-brother rings most days anyway so I knew they weren’t being left in isolation.  He needs to take more responsibility for them in any event and take some of the weight off my shoulders.

My Mum isn’t drinking anywhere near as much as she was, though she is still drinking.  On Christmas Day I went there for lunch and she had a large glass of Baileys with her meal.  Only the one, but even so.  That she couldn’t not drink despite the fact she nearly lost her only daughter over her alcoholism saddens, but doesn’t surprise, me.  The fact that my Dad had obviously wheeled her down the alcohol aisle at the supermarket to buy the Baileys also makes me sad – I have no idea where his backbone is in standing up to her (my Dad rarely drinks btw and had lemonade the same as me at Christmas lunch).  I’m very conscious that there is now a large opened bottle of booze in the kitchen which is going to have to be drunk and where that will lead.  I’m just letting them get on with it.  They are grown-ups and it’s not up to me to tell them how to live.  They are both aware of the consequences of their actions and have chosen drink over their relationship with me, a fact which I try not to be mortally wounded by.

I am still taking care of them, however – my conscience wouldn’t let me not because whatever their faults they are old, ill, vulnerable and my parents.  I went with my Dad to his back appointment the week before Christmas and rang about his blood results.  I also offered to take my Mum to her lung appointment on 29th December.  Over Christmas I set their new broadband connection up, renewed Mum’s stairlift insurance and took their electricity meter readings.  They physically couldn’t manage without me – I know it and they know it, and I think we both feel stuck in the situation.

I have loved not having to deal with them so much.  I’ve felt relaxed for the first time in years and finally feel rested – I’d forgotten what that feels like.   I still fight the guilt that I am not spending more time with them but then habits that have existed for years are hard to break.  It’s been wonderful, though, to just be able to do whatever I like for a change and not have to think about them or work around their schedules.

So there we are.  I have no idea what the future will hold because we’ve had some worrying blood results in respect of my Dad and if it turns out that he’s seriously ill everything will change so I’m just taking it a day at a time.

So my Christmas week was quiet and uneventful, just the way I like it.  I’ve spent some time preparing a photography talk which I’m giving at Camera Club next season and trying out my new flash light in my spare bedroom but other than that I’ve just chilled.  Saturday was sadly a right-off as I had one of the worst migraines I’ve had in ages, complete with awful dizziness and vomiting, and the headache and hangover from that is lingering today so I’m expecting a second day in bed being bored and a bit fed up but such is life.  Tomorrow is another day.  Nay, another year!  I have told my Camera Club that I am going to try for my next photographic distinction, the DPAGB, in November so that’s my goal for 2018.  I’m also facing a new battle with my insurance company and am opening a new case with the Financial Ombudsman next week.  So the year already holds goals, challenges and endless possibilities and I am looking forward to every one 🙂  Happy New Year!

 

Christmas roundup

Christmas Eve.  I can’t get my head round that.  It seems like days ago that I had my 50th birthday, not 3 months.  Seriously, a time thief lives in my house 😉

I’ve had a lovely, calm, peaceful week.  Looking back I have no clue what I’ve been doing but it seems to’ve involved eating lots of Pringles and Wine Gums which I’m going to regret when I finally get out of my elastic waist trackie bottoms and into my jeans in the New Year!

I went with my Dad to get the results of the MRI scan he had done on his back.  The good news is there is no stenosis.  The bad news is there are multiple bulging discs which are compressing the nerves, hence the pain and weakness in his legs.  Treatment begins with “conservative management” ie physio to strengthen the muscles.  I can’t see it working because until four months ago when his leg started to give way he walked 6 miles up the fells every week and has done for the past twenty years, so he has the strongest legs of any 80 year old I know.  A few stationary bike exercises are going to be child’s play to my Dad.  But you have to play the game and do what the doctor suggests before he’ll consider referring you on to a specialist.

Both my dog walkers are now on holiday until the new year, which means I have to take Bertie out twice a day.  It’s a killer, even going on my scooter.  I have to get bundled up like I’m going on an expedition to the North Pole, uncover and unchain my scooter, get Bert’s harness and lead on, actually go on the walk, recover and rechain my scooter, get all my kit back off again and wipe Bert’s paws (the mud in my village atm is ridiculous), which takes a good hour for a half hour walk.  And repeat five hours later.  It’s exhausting  and I come back with my brain so foggy I can’t form a thought, not that the mutt cares 😉

Today I am making some mushroom soup and a lemon meringue pie for our Christmas lunch tomorrow.  I gave up doing a huge roast dinner several years ago because neither my Mum nor I are up to it, so we have soup, sanis and a pudding on Xmas day and then go out for our roast dinner on Boxing Day to a lovely restaurant.  It works for us.

I shall leave you with my annual carol, sung to the tune of Once In Royal David’s City.  Whatever your Christmas holds I hope it’s filled with love and laughter 🙂

Once in snowy North West England,
Lived a lonely, country girl
Mast cells that were sorely rampant
histamine that made her hurl
Jak she was that poorly child
M-CAD was that illness vile.

Subluxations sent to try her
Joints all wandering out of place
Splints and braces plus her scooter
helped her join the human race
Jak she was that poorly childmistletoe
E.D.S that illness vile

Monthly torture from her cycle
makes her feel that she is cursed
Menopause that drives her crazy
She’s not sure yet which is worse
Jak she was that poorly child
Endo is an illness vile

Nervous system going bonkers
Pins & needles all the time
She would kill to just get tipsy
she’s allergic to the wine
Jak she was that poorly child
POTS doth make an illness vile

She is tired beyond all reason
Half her life is spent in bed
That Hugh Jackman is her Carer
fantasies just in her head
Jak she is that poorly child
M.E. is an illness vile.

Doctors told her she was crazy
symptoms were all in her head
She just hoped they’d catch her illness
or that they would drop down dead
Jak she was that poorly child
Chronic illness truly vile.

Blood tests showed she’s truly sickly
She had known this all along
Blew a raspberry at the doctors
who all said there’s nothing wrong
Jak she is that poorly child
She has proof now she can smile!

 

Weekly roundup

The start of the week was one of the nicest times I’ve had all year.  My crippling exhaustion and dizziness has lately subsided and I actually felt pretty good for once, or at least I would have done if I hadn’t woken barely able to move my head or left arm having done something to the top of my spine in my sleep.  But other than the burning pain of that and the fact that a week on I still can’t lift my arm, I’ve been tickety-boo 😉

Last Sunday my bezzie and I decided to go up the Lakes for lunch and to have a smooch round a huge garden centre filled with all things Yuletide.  It was lovely, even if I couldn’t afford to buy anything, and I ate salmon with a creamy cheese sauce which was to die for (sod the histamine, it’s Christmas!).

Monday I’d tried to organize a half day photographing birds of prey as a present to myself.  I’d asked along a lovely friend from my Camera Club whose husband was giving her the day as a Christmas gift.  However, the owner of the bird centre had really messed us about and when by 5pm the day before he hadn’t even bothered to confirm the event with me I rang and left a message to cancel it.  There was no way he was getting £150 of our money for four hours if he couldn’t even be arsed to give us directions to his farm!  So we ended up going to one of our favourite spots and photographing Red Squirrels instead.  It was brilliant.   A freezing, sunny, crisp winter’s day with an overnight temperature of -11C meant that everything was ice covered and spectacular and afterwards we went to a gorgeous restaurant for pizza 🙂


Tuesday I’d been invited to a friend’s house for lunch, along with 9 other people.  My friend lost her husband this week last year and wanted to thank us all for our support, which was so kind of her.  She has Parkinson’s Disease yet had put on the most fabulous spread and we all had a fun and laughter filled time.  Tuesday night I gave a lecture on Composition at the monthly beginner’s photography class, which I enjoy even if going out in the evening makes me ill.  I always drive home, however, crippled with self-doubt.  It’s monumentally difficult to talk for over an hour when you have a brain which feels like it’s full of cotton wool and I worry that I’ll get muddled, make mistakes and not realize, or generally make an arse out of myself.  It was reassuring, then, that one of the attendees had told my friend that the talk was excellent and I was good at what I do.  We all need encouragement and validation sometimes 🙂

By Wednesday I was flagging but I still made it to my Camera Club’s Xmas social, despite the beginnings of a thumpy migraine and a swollen and inflamed throat from all the talking the night before.  It takes a huge amount of adrenalin for me to go out at night and I am as high as a kite when I get home, consequently it’s often midnight before I can finally unwind enough to drop off to sleep.  Then at 4am I was woken suddenly by Bertie making some weird noises.  At first I thought he was being sick but when I turned on the beside lamp I realized he was actually having a willy licking session, before scratching about making a nest and dropping back off to sleep.  Which was fine for him but I was now wide awake and had the dubious pleasure of watching the sun rise!

With all the activities and lack of sleep I spent the whole of Thursday feeling like the un-dead.  It didn’t help that I was pre-menstrual, had period pains, backache and my head thumping had reached hammer pitch by lunchtime which made me sick to my stomach.  I was in no mood to be lectured at by some stranger on the internet.  It’s often not what someone says to me online which gets my dander up, but the way in which they say it.  There are those people who SHOUT at me to get their POINT across like I am retarded.  There are those who talk patronizingly at me like I am five years old not fifty.  There are the people who never write a kind, supportive or positive comment and only ever pipe up to criticize me (I do wonder who died and made them perfect).  There are those who think that because my views or experience differs to their view or experience that I am somehow wrong and they are right and that my views must be challenged and debated until I am won over to the other person’s viewpoint, which I find really stressful.  What happened to just allowing people to be different and letting me express my own views on my own blog, or sometimes just vent for heaven’s sake?  There are those who love to point out their superior knowledge and my lack thereof, missing the point of my blog entirely which is that I am on a journey of discovery about my health and life, learning as I go along and sharing this with you warts and all.  I’ve never claimed to be perfect and I am allowed to make mistakes, after all that’s how we all grow.  And then there are those people who are just plain rude and ranty, taking their shitty moods and chips on their shoulder out on me.  I wonder if they ever read their comments before pressing ‘Send’?  Would they go up to a complete stranger in the street hobbling along on crutches and looking decidedly unwell and start having a go at them, because that’s exactly what they’re doing to me online.  I’m always totally blindsided by these encounters, because although you are reading about my life and may think you ‘know’ me I only actually know a handful of my 600+ followers in real life.  You are mostly total strangers to me, so for someone to suddenly get in my face with no preamble feels hugely confrontational.   Not to mention pointless because no-one responds well to being patronized, lectured to, criticized or treated like they’re stupid so whatever point the person was trying to make, valid or otherwise, is completely lost.  So the moral of the story is to read back what you write and pretend that a total stranger has walked up to you on the street and said that to your face out of the blue – are you still willing to press send?