Tag Archives: myalgic encephalomyelitis

Weekly roundup

Sorry there has been no blog post this week – I simply didn’t have the time, and more importantly, the energy.

Tuesday I drove my Dad 90 miles to the other side of the country for his pre-op assessment.  He has spinal stenosis due to a bulging disc and needs decompression surgery.  Eighteen months ago he was still walking 6 miles up the mountains every week but now needs a wheelchair outdoors and has to use a stairlift to get up the stairs to his apartment.  His deterioration has been swift and scary and he’s desperate for surgery, for which he’s now been waiting nearly 4 months.  At the assessment we met the Surgeon who will be carrying out my Dad’s operation and he dropped a bit of a bombshell.  He said that although my Dad’s MRI scan showed the narrowing in his spinal canal it isn’t bad enough to be giving my Dad such severe symptoms and he thinks something else may be going on further up his spine.  So while we wait for the surgery to take place I’ll need to take him back to the Hospital a further two times, once for an MRI of his upper back and neck and once for some nerve conduction tests.  While it’s bloody annoying to have to do another couple of 180 mile round trips I’m glad that the Surgeon is being thorough.  My Dad has MGUS (monoclonal gammopathy of undetermined significance) which showed up unexpectedly in his bloodwork a year ago and none of the doctors I’ve spoken to so far have wanted to know.  However, MGUS can cause peripheral neuropathy and we need to know whether that is contributing to his leg weakness.  He also has cramping/spasming hands to the point where he can’t even pick a cup up and again this has been ignored by the doctors we’ve seen so far.  But it’s not normal for heaven’s sake and I’m chuffed the Surgeon agreed and has decided to take a look at his neck at long last.

The Clinic was running 2 hours late, so we ended up having quite a long day.  We set off at 9.15am and finally got home at 3.15pm.  I was knackered.  However, that night I was teaching the beginner’s photography class so had to pull my leaden body and foggy brain together.  I managed to get through it but was so exhausted it was like an outer body experience and I can’t remember a thing about the evening or what I said!

I coped really well all things considered but the next day I woke to find I was crippled with pain and could barely walk.  I blamed it on all the driving and having to push my Dad’s wheelchair…………until my period arrived out of the blue :-/  My surging hormones seem to be affecting my ligaments massively as I transition into Menopause and even though my period has now finished my back and legs are still stupidly painful.  The constant shooting nerve pain right down to my ankles is particularly wearing and I can’t get comfortable enough to sleep.  I’m so over it I can’t even tell you and I had to miss Wednesday’s Camera Club as I simply couldn’t sit upright.

Thursday night I’d agreed to go to a Club event.  It was a buffet to thank those of us who had judged a recent International Photography Salon and I’d really been looking forward to it as I have no social life and rarely get to mix with other people.  Sod’s law that it coincided with having to take my Dad to the Hospital and my unexpected period, and I woke that morning feeling like road kill.  I lay in bed and cried at the unfairness of it all before eventually pulling my sorry arse together and just getting on with it.  I rested until late afternoon, had a bath, took some ibuprofen, slapped on my TENS machine and my SI belt and off I toddled.  I’m glad I forced myself to go because I had a smashing night but I’d be lying if I said I wasn’t still suffering for it three days on.

I’ve lost my reading glasses.  The case is on my over-the-bed table as it always is but the specs are nowhere to be found.  I have no clue where they could be and have searched every inch of my little house to no avail.  £160 of spectacles seem to have disappeared into the ether just before Christmas when I’m already broke.  FFS!

Speaking of Christmas, it’s five weeks away and I haven’t given it a second’s thought.  Arrrghhhh, panic!!

Today I am going out for lunch with my bestie 🙂  I don’t know why but this week I’ve felt lonely and a bit sorry for myself so I’m looking forward to seeing her, plus there’s the added bonus of someone else making me a meal for a change which is my idea of heaven.   But first I have to get my thermals on and take the hound out.  It’s a stunning, crisp late Autumn morning here in the lake district but it’s bollock freezing cold and I’m definitely going to need a hot water bottle stuffed under my jumper to keep me warm on my scooter.  It makes me look as fat as a whale but I’ve gained so much weight in the last 12 months I actually am as fat as a huge blubbery whale, so that’s alright then 😉





Weekly roundup

I seriously need to be resting now.  I’m exhausted and unwell.  But my life is so busy it’s not happening and I have no idea what the consequences are going to be.

There are only six Mondays to go til Christmas and I have not given it a second’s thought.  I haven’t had the time or energy, but I’d better start getting my backside in gear or I’m scuppered.

Following on from my car accident, on Monday I had to take my car in to the local body shop for an estimate and they told me it could be 3 weeks before they can repair it.  FFS.

I went to take Bertie out on my scooter on Tuesday…………only to discover that I had a totally flat back tyre 😦  So I had to ask my neighbour to help me jack the scooter up on bricks and get the tyre off so that I could take it into town to be repaired.  More sodding expense.

I told you in my last post about the lady at my Club who had a pop at me on Wednesday night.  I’d had a really enjoyable evening until then but went home feeling upset and angry.  She seems determined to spoil my enjoyment of the Club and I’m not sure what to do about the little bitch.

Thursday I discovered a wealthy, influential landowner is trying to persuade my local authority to build a dual carriageway of one of the busiest rounds in the country on the edge of my little hamlet.  It strikes fear in my heart and I’ve been busy writing to my Parish Council and my local Councillor to find out what stage the proposal is at and if there’s genuinely any chance it could happen.  I live here because I’m in bed for 17 hours a day and my poorly brain needs peace and quiet – I’d be forced to sell up if this road went ahead and I LOVE where I live 😦

We finally heard from the Hospital about my Dad’s spinal surgery, so on Tuesday I’ll be taking him on a 180 mile journey for a pre-op assessment.  Please God that means his surgery is imminent.

Yesterday I did a paid photography job.  I don’t usually agree to do paid work because it’s way too stressful – I have to be well on the day and there’s huge pressure to make a great job – but I’m so skint with Christmas looming and my car accident that I had no choice.  Thankfully it went well and I hope they’re happy with the photos which are Christmas presents for their parents!  My brain today, however, feels like it’s been fried, my throat is killing me and I feel very fluey and MEish :-/

This coming week is absolutely and utterly nuts and if I feel ill now I’m going to be in a coma by Friday.

Well, this is a cheerful post isn’t it?!  I’m not miserable in any way, just concerned that I’m doing too much and feeling more and more unwell.  After this week is out of the way I MUST make it a priority to rest, though I’ve been saying that for over a month now and life has a habit of putting the kibosh on my plans!


Weekly roundup

Blimey, I’ve had a bit of a week and don’t quite know where to start!   On the plus side my recent really bad pain flare, including all the violent, stinging nerve pain, has disappeared as quickly as it arrived but on the negative side I am on day 5 of a migraine and am just about demented.  I’m also still waking every sodding morning at 4.15am, the lack of sleep is now getting old and I am starting to get proper grumpy.  But other than that I’m tickety boo and my energy levels are remarkably good 🙂

My Dad’s heart results finally came back and all is fine, which is great but we are still in the dark as to what is causing his neck pressure, muzzy heads, dizzy/vomiting episodes, fatigue and severe bi-lateral hand spasms so I took him to see his GP.  She thinks the episodes are migraine and has given him some tryptans – what tosh.  My Dad is 79 and has never had a headache in his entire life.  These episodes don’t contain head pain and no-one starts with severe migraine out of the blue aged nearly 80.  She said the hand spasms, which are so bad my Dad can’t pick a cup up, are just “cramp”.  WTF?!  No-one gets cramp in their hands that badly and cramp doesn’t appear bi-laterally.  He needs a neck scan, having had a large lipoma taken off his neck several years ago but told it was embedded in his spinal cord and they couldn’t get it all out – I’m fairly sure it’s been growing all this time and is now pressing on nerves.  I honestly wonder what planet GPs are on.

Thursday was a BIG day.  I discovered I am one of only 60 photographers in the entire country to have been selected by the Photographic Alliance of Great Britain to have one of my photos exhibited in a London gallery.  O-M-flippin-G!!!  So I have applied for a disabled person’s railcard and will be making the 300 mile journey down to the Big Smoke in December to the opening.  How totally exciting!  It’s just a shame that out of the 50 members of my club only 6 congratulated me.  People want you to do well, just not too well.  Jealousy is a horrible emotion.

I was still high as a kite on Friday from the news and had a lovely lunch with my 3 old codger friends from the Club who were all delighted for me.  When I came home I backed up my drive to swing into my garage………..and hit a fucking car which was illegally parked.  As I’ve mentioned before, there is a business at the end of my drive and his customers continually park in my private driveway, partly blocking my garage.  I’ve been telling him for three years they are not allowed to park in my drive but he does nothing to stop them.  It makes me LIVID, particularly as they get grumpy with me when I ask them to move their sodding vehicle!  So it’s costing me my excess of £150 to get the damage to my car sorted and of course my premium next year will rocket.  If the stupid woman hadn’t been blocking my garage in the first place it would never have happened.

I honestly feel I am never allowed to be happy.  The second something nice happens in my life you can guarantee something shit will follow.  It’s really wearing.

On that cheerful note I am off to risk taking some ibuprofen as my right eye feels like it’s bulging out of its socket and I currently feel too nauseous to eat breakfast.  Bertie’s back is also sore this morning so he’s had to have extra paracetomol.  What a pair we are, but I still think Bert gets the better deal – every morning he lies blissfully on his back and gets his tummy rubbed, but when I ask him to massage my stiff neck he just rolls over and goes to sleep! 😉


No Change

My bestie and I had a full on moan fest this morning about our shared M.E. experience.  She has been ill for 22 years and I have been ill for 24 years and in that time nothing in respect of diagnosing or treating our disease has changed.  Absolutely diddly shit.

Actually, that’s not strictly true.  Things have changed, they’ve just changed for the worse which isn’t the goddamn plan or what we ever expected would happen.

I know many of you think I’m negative, cynical or plain old disinterested when the latest research breakthrough bounces around the world wide web, but it’s simply that I’ve lived through nearly a quarter of a century of this stuff and trust me when I say it all quietly fizzles out never to be heard of again.  Little pieces of the puzzle have been emerging for years, but like I said to my friend “all disease has one underlying cause.  ALL disease.  We know what Alzheimer’s and Multiple Sclerosis looks like on a scan.  We know what cancer looks like in a petri dish, even though different cancers affect different organs and appear for different reasons.  We know what diabetes looks like from blood tests.  That’s because all disease has one biological cause and despite 30 years of looking we’re still nowhere near finding the cause of M.E.  Absolutely nowhere near” which is a bloody depressing thought.

I spent 14 years on the board of an M.E. charity and during that time nothing changed.

I was an expert patient, representing severely affected sufferers in the setting up of ME/CFS clinics around the UK 17 years ago but it was all for nothing.  My voice wasn’t listened to, and the only treatments offered by the Clinics were ‘Mindfulness’, CBT and physiotherapy none of which made a shit of difference to my friends who were bedridden, being tube fed, in excruciating pain, paralysed, having seizures and unable to speak or tolerate daylight.  The situation hasn’t changed in any way during the intervening years and my local ME/CFS Clinic has since closed.  There is still, all these years later, no effective treatment for any aspect of M.E.

I took part in the PRIME project, and the CHROME project which followed severely affected sufferers over a decade – the information from both seems have disappeared into the ether.  I took part in the Lost Voices book, which told the stories of severely affected sufferers but was only read by patients, and some of my friends took part in the Voices from the Shadows film (Jen Brea’s Unrest isn’t the first great film to be made on M.E.!) which caused a stir at the time and then was very quickly relagated to history.

I did numerous media articles and interviews alongside many other sufferers and, to an extent, the publicity worked in as much as at least most people have now heard of M.E. but it’s still the butt of jokes, we’re still thought of as lazy idle scroungers and all the lay public really know about M.E. is that it’s an illness that makes you feel tired a lot.  Yeah, that’s it – spot on.  Mind you, the situation really isn’t helped by the myriad of patients who appear in the media with stories which tell how they’ve been “really ill” for 2 years, but then ate a paleo diet and took some probiotics and now they’re back at work and feeling great.  Yeah, thanks for that publicity from people who clearly didn’t have ME to start with.

The biggest change I’ve seen over the years is the watering down of the diagnostic criteria, which makes me so angry I could spit and the introduction of the name CFS, which trivializes my disease.  I am not chronically fucking fatigued – I nearly died for god’s sake and no-one dies from being tired.  The diagnostic criteria no longer stipulates that “activities of everyday  life are reduced by 50%” which means people can now work full time and still have an ME diagnosis, a situation I find unbelievable, and “fatigue” has replaced “malaise” as the number no.1 critiera.  Really?  Fucking REALLY?!  I’ll make sure to tell my throat that when I’ve spent too long on the computer and suddenly feel like I’ve got tonsillitis (my M.E. warning sign that I need to rest) or when I start to speak like a stroke patient because my brain has forgotten how to engage with my mouth.

We’ve had enough time, now, to have made some kind of breakthrough but it hasn’t happened.  In the UK the psychiatric lobby is still going strong and the only official treatments offered to M.E. patients are graded exercise and cognitive behavioural therapy which are about as much fucking use as a chocolate fireguard.  Where has the decades of research and lobbying and activism gotten us?  No-where it seems.  We were fighting the psycho-social view of M.E. back in 1996 and we’re still fighting it more than two decades later.  When is it going to stop?

The answer to that question, I told my friend, is not until there is a diagnostic test for M.E.  It’s the only thing that will ever shut the UK’s psychiatric lobby up or convince the public we are genuinely and physically ill.  All the protesting in the world is a total waste of time, money and energy because until we can prove that M.E. is a physical disease by some kind of diagnostic test no-one is ever going to believe us, no matter how loudly we shout.  And being as though we are no-where near knowing what causes M.E., let alone having a simple diagnostic test, we might as well all just sit in our beds with a brew watching the X Factor.  Which is precisely what I plan to do now I’ve got that little rant off my chest.



Weekly roundup

Apologies that there has been no post this week – I have felt like road kill due in no small part to  Aunt Flo, who woke me hammering on my uterus at 2am Monday morning.  The Bitch.  I was rudely awoken by stabbing pain, went for a wee and the blood poured out of me like I’d cut a fucking artery.  And here was me thinking my periods would just stop and that would be the end of that – I forget the Gods are always listening and laugh at me whenever I think something in my life will be easy.  On the upside, at least now I know why I was such a jibbering emotional wreck last weekend and that I’m not losing the plot after all 😉

Since developing M.E. 24 years ago I’ve had tinnitus.  Luckily it’s only been mild and, although a little bit irritating, has never interfered with my life in any way…………until now.  For some reason during the past week the volume has suddenly gone way up and I’m now conscious of a hugely annoying high pitched whine every second of the day.  It’s louder than the telly which distracts me from the programme I’m watching and lying peacefully in silence to rest has been out of the question.  Why on God’s green earth has it suddenly gone bonkers?!  Oh well, at least waking each morning wondering what new tortures my body is going to inflict on me means I’m never bored.  Pissed, fed up and sometimes suicidal, but never bored 😉

Thursday I had lunch with my closest friend from Camera Club.  She moves away to the North East next week and I am really going to miss her 😦  I’ve got to be honest, there aren’t that many people in the world I truly like.  I am constantly amazed at how disappointing I find most folk and do find it difficult to meet people who are kind, interesting, easy to talk to and fun to be around.  L is one such person and, with our shared passion for photography, she has hugely enriched my life.  She is genuinely happy when my pictures do well, even though we’re technically competing against each other, and came with me to Scotland recently to support me when I gave my talk.  She also takes my health on board without trying to mother me or tell me what I should, or shouldn’t, be doing like she’s the expert.  I thought about chaining her up in my shed to stop her from going but I think her Husband would eventually notice she was awol and call the cops 😉

During the summer holidays my friend’s two children came round to do some modelling for me.  I use them as my guinea pigs to try out some of my more unusual shots and, as they love dressing up and having their picture taken plus I give them free framed prints for their efforts, it works well for all concerned.  I had an idea for the teenager to dress her in eastern clothes to highlight the issue of child marriage but, having taken the picture, I had no clue how to create the image of a desert I had in mind for the background (which symbolizes the emotional desert these girls find themselves in).  I’ve sat on the shot for several weeks and eventually came up with a plan to re-create the Sahara in my spare bedroom with a small bag of play pen sand.  After much effort and faffing in Photoshop I’m fairly happy with the end result which I’m calling ‘Child Bride’.  My friend said she was uneasy with the picture as it uses a white girl in Eastern dress but not all child marriages take place in Africa and many Middle Eastern and Asian girls are fair skinned.

Friday I felt absolutely and utterly crap – my brain was full of treacle, my legs didn’t belong to me and my entire body felt poisoned.  I sometimes forget how awful M.E. can be as it’s been so long now since I was severely affected.

Saturday was the annual competition between my Camera Club and all the other clubs in my part of England.  One of my pictures had been chosen to represent our Club and I’d been really looking forward to going, not least because the President of the Photographic Society of America had flown over to judge the event.  I woke feeling like some dead animal Bertie had dug up in the garden and ummd and ahhhhd for 3 hours over whether or not I should risk attending the competition which was fifty miles away, but I’d looked forward to it so much I decided “fuck it!” and dragged my clothes on.  In the end I coped OK all things considered and had a really fab day – my photo was awarded 18 points out of 20 so I was happy with that considering the judge was a wildlife fanatic and my photo was a fantasy picture.

I know I have been doing wayyyyy too much in recent months and I simply can’t keep that up without dire consequences to my health.  The thing is, I’m really enjoying life atm and it’s so hard to rein that in and lie in my bed bored to tears resting!  I’m usually very good at pacing having had nearly a quarter of a century of practice but I’m so passionate about my photography that I’m finding it hard to keep a lid on my enthusiasm.  There are times being chronically ill truly sucks!




Weekly roundup

I’m still buzzing after being contacted by the researchers from Hong Kong about their histamine testing app.  Victor, from the technical team, has emailed to say the latest prototype is out at the end of the month and he’ll send me that to try, so fingers crossed.  I was worried that my phone runs on Windows and most apps are for Android and Apple, but he said that should be fine.  I think they have cloud storage where I submit the results, but I’ll wait to hear more about what I have to do when I receive the sensors.  Their press release says the device measures “up to 100ppm” for histamine, but I don’t know if that means 0-100ppm (which would be most beneficial for us) or 100-infinity – after all they are looking at spoiling foods – so will have to wait and see.  Please God may it work and we can finally know for sure which foods we can safely eat.

I’ve had the builders in this week and it’s been torture.  They’ve been re-rendering the side of my neighbour’s house but had to be in my garden to do it.  I also had my patio re-grouted, but am not happy – now it’s dry there is grouting all on the edges of my tiles.  The grouting is white and my tiles are charcoal grey slate – it looks a right sodding mess 😦

My electric company have taken the complete piss this week.  I’m £280 in credit and am paying them over £100 a month for my fuel, yet they emailed this week to say they are taking another £100 out of my account!  Er, why?!  Their reason was “with the beast from the East this spring you may have used more fuel than normal and we’re worried you will use more fuel than you’re paying for this winter”.  They failed to mention we’ve had the hottest summer since 1976 and I’ve used less fuel for the past 3 months.  And unless they have psychic powers they can’t possibly know what the weather will be like this winter – it could be the warmest on record!  As it is I’m so much in credit I’ve already paid for my fuel until January, so I’ve made a formal complaint and said if they take a penny out of my account without my authorization I’ll report them to the Ombudsman.  Fucking robbers.

I’m now on day 57 of my cycle with no visit from Aunt Flo.  I’m still sleeping badly though, have rumbling period pain and my migraines have been ridiculous.  In fact, I’ve felt absolutely rubbish all week and my energy levels are zero.  My bestie came for a visit on Thursday and I was telling her the only bright spot was that my mood has been great all things considered – I forgot the Gods were listening.  Yesterday I was like a bear with a sore arse all day and then last night burst into tears for no reason.  This morning I’ve woken feeling proper poorly and unable to cope with any of it for another second.  Fucking hormones………they’re the gift that keeps on giving.

My Dad has been particularly unwell the past few weeks and despite having his 4 day holter monitor done a month ago, and his echocardiogram done over a fortnight ago, we have had no results from Cardiology.  I rang his GP this week to chase it all up and she’d heard nothing either, so suggested I contact the Cardio’s secretary at the hospital directly.  She told me the results could take 6-8 weeks, despite the fact I knew both results were already on my Dad’s file because I’d checked with the scanning department!! I told her it wasn’t good enough as my Dad keeps collapsing and she eventually agreed to make the consultant write to us with the results some time this week – why is every single thing such a fight? *sigh*

Sorry for such a grumpy arsed post but I’m feeling lonely, totally fed up and absolutely sick and tired of being sick and tired.  The prospect of spending yet another Sunday in my bed on my tod with nothing to do and feeling like death warmed up is monumentally unappealing and the jobs in my house are piling up with no prospect of me currently being well enough to tackle any of them, which is making me stressed.  I am still able to appreciate the fact that it’s Autumn here in the north of England, however, and how pretty everything is looking – here is one of the ‘main’ roads into my village this week – I realize every day of my life how lucky I am to live where I do 🙂




Weekly roundup

My life has hit an all time low this week.  I’ve had to buy hemorrhoid cream.  Fifty years of straining to give birth to ginormous poo courtesy of my overly stretchy bowel has finally taken its toll and I now have a slimy, ridiculously itchy grape hanging out of my bum.  Somebody shoot me 😉

The entire week has been taken up with photography-related gubbins, so apologies if this post bores you all rigid.  Tuesday night saw the return of our monthly beginner’s workshops and I teach the opening class.  It was full and I think it went well despite the fact my voice was still struggling a bit from doing the Scottish talk the week before.

Wednesday night was our first league competition of the new season at Camera Club and I’m delighted to say I won joint first place with myself for my Raven Tower picture and the selfie I called ‘Behind the Veil’.  I was chatting to the judge afterwards and she said:
“the lady in the scarf is beautiful, who is it?”
“Me!” I replied.
So she looks at me with my glasses on, my grey roots showing, my wrinkles and turkey neck and the fact I hadn’t even brushed my hair that night and replied, shocked “really?!  Are you sure?”
Er, what was she trying to say exactly? PMSL 😀
“Yeah, thank God for Photoshop and the fact it takes 30 years off me!”
To be fair I don’t look anything like I do in my selfies in real life – I’m 51 not 21 😉

I think I may have mentioned the fact that I’ve decided to go for my next photographic distinction and the deadline for submissions is 22nd of this month.  It’s taken the entire summer to decide which fifteen photos to use, get outside opinions on how to improve them, get them perfect, print them off and then I’ve spent three days this week mounting them onto 50 x 40cm board.  I’m finally done and it feels like a huge weight has been lifted from my shoulders!

Of course, all this activity lately has sucked every ounce of energy I possess from every cell in my body and I now feel like road kill.  My histamine levels are really high and I need some down time over the next couple of months to stabilize my health.  Not only that, but I’ve been neglecting my parents a fair bit and poor Bertie has had to come and plonk his bum on the keyboard in order to get himself noticed.

I have now gone 50 days without a period, hurrahhhhhh!!!!!  I still have daily, low level period pain though, backache and I’m seriously not sleeping but for the first time in 40 years this month I’ve been spared excruciating endo-related period pain and for that I am truly thankful 🙂