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.

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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.

 

 

The Need To Create

When I was seeing the Counsellor last Christmas about the situation with my Mum, she said to me “OK, so what creative pursuit do you follow?  I know you do something because you couldn’t have survived your life otherwise and stayed sane.”  Her insight took me aback.  I hadn’t realized how much I rely on my creativity.  It’s a huge distraction, gives me a goal, purpose, challenges and connects me to the world from my bed.

As a child, reading books literally saved my life.  I could lose myself in a story, taking a break from the chaos of my life.  But I’ve also always been artistic, spending hours as a young child drawing and colouring.  My Mum taught me both to knit and crochet when I was really little and I knitted all my doll’s clothes as a kid.  When I went to primary school we had compulsive home economic lessons (while the boy’s did woodwork!) and it was there I was taught to sew, tiny delicate embroidery stitches which took hours to perfect.  I love having the ability to create something out of nothing.

After I left school I was way too busy for hobbies and, reading aside, my creative pursuits were put on the back burner though I used my creativity in other ways, renovating my Victorian house and tarting up old furniture as I couldn’t afford to buy new.  When I became ill, however, all that changed.  I had to find a way of passing the endless tortured hours, so went back to embroidery this time buying kits and making tapestry cushions which took months (sometimes years) to finish as I could only do little bits at a time, and which I gave as gifts for Christmas and birthdays.

A decade on and my joints were becoming ever more painful, so I gave up the embroidery and took up crocheting which I find easier.  I discovered the charity knit-a-square and now regularly make beanie hats and fingerless gloves to help AIDS orphans in Africa.  They also take simple knitted or crocheted squares which they make into blankets – there are a few patterns on their website but if you’re going to send something please only make items they need.  That I can still be useful, help others less fortunate than myself and contribute to the world is incredibly important to me.

Before my MCAS & HIT diagnoses when I was having anaphylactic symptoms every time I ate and living life in a permanent state of palpitations, muscle spasms, nausea and anxiety, I crocheted for hours on end.  I find it very soothing, even if the repetitiveness killed my hands and wrists!  It’s really easy to learn too, with only 1 basic stitch which is modified, so if you fancy giving it a go I’m sure there’s a YouTube video somewhere which would teach you.

Of course, I then discovered photography which I simply love although it is something I can only do on the days I feel well enough to be up and about.  I admit to feeling a bit guilty about my photography, though, because it benefits no-one but me unlike my sewing and crocheting which are given to other people, but we all need something which is just ours and photography has taken the place books used to fill (my brain has been too poorly to read for over twenty years now).  And having taken the photographs I can edit them in bed using Photoshop, brain fog permitting.

When we’re chronically ill we all find individual ways of coping and remaining creative has been a big part of that for me.  It’s also a great distraction and if I make something usable at the end of it then so much the better.  I’ve found that many of my ill friends are creative in some way or another: they make beautiful jewellery, cards which are sold for charity, are crafters or fellow photographers.  That we can make art despite the most dire of circumstances is a testament to our spirits and our innate need to connect with the world, and each other.

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!

 

Health-care sexism

Jen Brea, creator of the M.E. docu-film Unrest, had an article published in the Boston Globe recently which talked about the bias women face in the health-care system.  About how auto-immune diseases, which predominantly (but not exclusively) affect women, attract the least funding of virtually any illness on the planet and about how women are much more likely to be told their symptoms are ‘all in their head’ compared to men.

Her article was shared on Facebook and attracted comments which said she was “dividing the M.E. community” to weaken our collective voice, that it is not a men v women issue and that such rhetoric isolates men.  These comments miss the point entirely.

Jen is not saying that M.E. doesn’t affect men, or that men are never told their symptoms are psychological, but the truth is that around 80% of M.E. sufferers (and auto-immune diseases in general)  are women and that women are historically less likely than men to be taken seriously within the health care system.  It’s just a fact, like the sky is blue, and ignoring it won’t make it go away.

Funnily enough, I was talking to my Mum yesterday before I read Jen’s article about the different way she is treated compared to my Dad.  Last year they were both asked for routine urine samples and both contained blood.  My Dad was immediately put on antibiotics.  My Mum received no treatment whatsoever.  What the hell is that all about?!

My Mum has severe and progressive COPD, is missing half a lung and has Emphysemia yet was dismissed from the lung clinic 4 years ago.  They were so gobsmacked about that when she was in hospital recently with her Guillain Barre the consultant immediately re-admitted her to the lung clinic so that her lungs could be monitored.  My Dad, OTOH, who has never spent a single day in hospital in his entire life and who is fit as a Mally Bull has recently had some moderate leg pain and weakness.  Within a month he’d had a Doppler scan, an MRI scan, a full blood work up which is being repeated in 3 months time and already has an appointment for physiotherapy and a referral to the spinal team.  Which is great, but it’s not like he’s going to die from a bad back…….unlike my Mum who is absolutely dying from heart failure, kidney failure and lung disease yet is not even being monitored let alone treated.

Baldness in men receives six times more research funding than M.E.. The fact that vain men are losing their hair and might not look at pretty as they did in the twenties is six times more important to our health authorities than the fact that millions of (predominantly) women all over the world are bedridden or in wheelchairs for the rest of their lives.  Are we not even supposed to discuss this?  And if not, why not?

When I’ve discussed the inequality of women here on my blog I’ve had comments from other women saying it’s not as bad as I make it out to be because they haven’t experienced it. Good for them that they are middle class, educated and living in America.  Not poor and living in the Yemen or Saudi Arabia, or having their clitoris cut off because of their religious beliefs, or working in the same job as a man at the BBC yet being paid 1/3 less than him, or being raped because they want to work in the film industry, or being paid 7 years less health insurance because they were born with a vagina and not a penis.

That anyone would criticize Jen for merely stating a fact gobsmacks me.  That the criticism would come from women appalls me.  Jen is not denigrating men or dismissing their experience, she is standing up for women and she should.  We all should.

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!

 

Avoiding The Pit

I am prone to clinical depression.  I had a chaotic childhood which predisposed me to mental health problems.  I have mast cell disease which definitely affects my moods and depression runs in my maternal family, in my Aunt’s case so severely she had electric shock therapy (which BTW doesn’t work).  My Mum has suffered from depression my whole life and I have three female cousins who turned 50 this year and all have suffered from depression for as long as I can remember, albeit at various levels.

I was clinically depressed during my teenage years and half-heartedly attempted to take an overdose.  I was definitely depressed when I got divorced, though it wasn’t clinical depression.  And I have had one serious depressive (actually more bipolar) episode since I became ill, though I think that was mast cell related because it was totally out of my control and felt more biochemical than emotional.  So when I talk about depression I do have some experience of the condition.

But I am not a victim of depression.  I bloody well refuse to be.  I have watched my Mum suffer from the disease my whole life and do absolutely nothing about it.  Being miserable seems to be a familiar comfort blanket and certainly not something she seems to want to change.  I simply don’t get that.  I only have one life and I’m damned if I’m spending it moping around and bringing everyone around me down.  I’m acutely aware I have a tendency towards depression and am as proactive about that as I am about my physical health.

So how do I go about avoiding the pit of depression?

  • Acceptance.  We can’t change the past and, in my case, I can’t change the present either – I’m never going to be healthy again a day in my life and there is nothing I can do about that.  So I accept it just like I accept the weather outside my window and I live as full a life as I can despite it.  When I was bedridden and suffering the tortures of hell it was impossible to be “happy” but I learned to be accepting, which gave me peace.
  • Purpose.  We all need a purpose in life or there’s no reason to get out of bed in the morning, especially when that involves pain and illness.  My little rescue dog gives me that purpose.  Regardless how I’m feeling he’s awake at 6am and demanding to be fed.  He then wants a tummy rub, his morning walk (paid for by me), his feet wiped, his Dentastix for lunch, another walk, more feet wiping, his tea and a bedtime cuddle.  My reward for all that hard work (and, oh boy, is it hard work) is completely unconditional love and a furry bundle that makes me smile every day of my life.
  • Passion.  I honestly don’t know how I’d get through without my photography.  It gives me a goal, pleasure, forces me to get out in the world, mingle with other people and forget about my health for an hour or two.  The editing side of photography is something I can do in bed, picking it up and putting it down again when my health and energy wax and wane.  I simply love it.
  • Distraction.  Due to all the resting I have to do my mind has a lot of time to think and not all my thoughts are helpful, so I have to find ways of switching them off.  I watch far too much TV, even having it on in the background when I’m cooking or doing chores, so that my brain is distracted from dwelling on the negative.  I listen to loads of talking books which I download free from the Library.  I have them on when I’m out with Bertie, driving the car or lying in the bath – in fact any time I am relaxed, because I don’t want to give my mind too much space to think about stuff which only makes me sad, angry or frustrated.  I even listen to a talking book as I drop off to sleep or wake in the night, so that my brain has something to focus on other than how crap I feel.
  • Gratitude.  I know this is an Oprah cliché but for me if I start focusing on all the things I don’t have or can’t do my mood nosedives, so when I find that happening I make a conscious choice to be grateful instead.  I had my Christmas groceries delivered yesterday and as I was huffing and puffing and moaning to myself about having to put it all away (my back, neck and arm are still really painful) I stopped in my tracks, called myself an ungrateful cow and started thinking instead about how lucky I was to have all this beautiful food and a clean, safe home in which to eat it.  And then I spent a cosy hour on the couch stuffing my face with Pringles and watching Eastenders.  Bliss, although my waistline will never forgive me 😉
  • Setting myself up for success.  My whole life I’ve attracted people with issues who want to offload their crap on to me.  Which is fine – we all have problems now and again and need someone who can empathise, but I began to realize that these people’s problems were never resolved. They were emotional vampires, sucking the very life out of me in order to raise themselves up and they had to go.  Which is why I feel so trapped in the situation with my Mum because if she were anyone else in the world I would have dumped her ages ago.  I only want to be around people who make me feel joyful, happy, supported, encouraged and understood and the relationship has to be a two way street – gone are the days where my friends and  family do all the taking and none of the giving.

I also avoid negative information.  I catch the news headlines so that I know basically what’s happening in the world and then I switch channels.  There is nothing whatsoever that I can do about the situation in Syria, Brexit or the fact that 6 people were killed on the motorway this morning and hearing about it can make me feel emotional, so I don’t listen.  I don’t embark in heated discussions online because I find it stressful and you can guarantee someone will lose their cool and start being nasty which I don’t need.  I try my level best not to take on the weight of the world because my shoulders simply aren’t wide enough.

  • I put in the work.  I’m sure some people are born with a sunny disposition and nothing gets them down but I sure as hell wasn’t.  For me, happiness takes work and it’s something I aim for each and every day.  If you’re predisposed towards depression you have to make an effort to not be depressed.  And it is an effort, especially when you’re already feeling ill and exhausted.  But the good news is the more you practice happiness the easier it becomes, whatever life chucks your way.