Tag Archives: myalgic encephalomyelitis

Weekly roundup

How is it possible for time to both drag and fly by?!  That’s how I feel the last several days have gone – the evenings have often seemed interminable while the days have zipped by at an alarming rate of knots.

I had my 51st birthday this week, which passed pleasantly enough even if most of the day was spent on my tod as usual.  I did, however, go out for lunch with my parents but I paid for my little jaunt by way of a migraine which started at about 9pm and by 2am was at warp ten.  FFS it was my birthday – you’d think my body would take just that one goddamn day off.

I wasn’t particularly looking forward to Camera Club on Weds night because my lovely friend Linda is no longer there to sit with and one of the members was spending the evening showing us photos of his holiday to Asia (not that I’m jealous in any way, having not left Cumbria since 1996), but to be fair I did actually have a slightly better time than anticipated and if nothing else it was nice to get out of the house even if my back did scream at me all night that it would rather be in bed.

Friday I was kept awake most of the night with yet another humdinger of a migraine which nearly drove me demented.  Needless to say the rest of the day was a right off.  My hormones are clearly playing silly buggers which is why I’ve been so headachy and, for the most part, I’ve also been grumpy and exhausted plus I have hives on my arse which shows my histamine levels are up.  Yay.

Saturday, despite still feeling a bit rubbish, I decided to try a photo out I’d had in my mind for a while so I palmed Bertie off onto my friend in the village, made my way through a field full of scary Bullocks, changed into my ballgown, wig and wellies hoping no-one saw me and called the Police, then spent half an hour inside a tree (being bendy has to have some advantages).  I’m quite chuffed with the result, which I’m calling From Little Acorns Great Oaks Grow, and have decided to use it as the last picture for my Distinction in November 🙂

Speaking of Distinctions, I thought my images had been accepted into enough international Salons for me to apply for my first FIAP (international) award but I discovered this morning that I’d read the rules wrong and still have another 2 Salons to go *sigh*.  I know I’ll do it, but it’s all so fucking expensive I’ll be eating baked beans from now until Christmas (at least I would if my mast cells would let me 😉 ).

This morning I decided to tackle an overgrown ivy on the wall of my little front garden with some shears.  I sometimes forget I have hEDS and my wrists are fucked.  Remind me to never do this again!

 

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Weekly roundup

I’ve had to deal with stress and disappointment this week but my health, and hormones, have been in a good patch so I’m delighted to say I’ve coped with everything really well 🙂

As many of you may remember, I’ve decided to go for my next photographic distinction and need to submit 15 mounted A3 prints by mid October which seems a long way off but is actually only 5 weeks away.  I’ve recently been gathering feedback on my choices from experienced photographers and last Sunday decided I needed to get cracking and make a start on my submission, so I printed off my first image………and it looked nothing like it did on my screen!  Printing professionally from home is incredibly complicated and when I first got my printer I spent 3 months getting the prints to exactly match my computer and have had no problems whatsoever since – why, now of all times, has it decided to go belly up?!  I spent the whole of Sunday and Monday stressed to the eyeballs trying to figure out what the issue was and, having Googled til my fingers bled and tried every single suggestion, gave up because I was doing everything right.   Thank God, though, I’ve eventually managed to find a work-around so I’ve had to go with that, even though it’s more faff and I shouldn’t have to!

Tuesday my friend Linda had invited me out for lunch and it was great to get away from the house and to take my mind off my printing nightmare.  At the same time it was bitter-sweet because Linda is moving away so it was our final get together.  She was my closest girl friend at Camera Club and we regularly went out for lunch or on photography days – I have so few friends, particularly ones as nice as Linda, that I’m really going to miss her 😦

Wednesday was a big day.  My lovely friend John from Camera Club offered to drive me the 150 mile round journey to the Sunderland Eye Infirmary about my floaters, the outcome of which I discussed in this post.  To say I’m gutted about the decision not to do surgery is an understatement but I’m trying to just be accepting and carry on…………let’s face it, I don’t have much choice.  I went armed in the car with 2 cushions, my acupressure travel sick bands (I’ve had wicked travel sickness my whole life, probably mast cell related) and my TENS machine with 4 pads on full pelt to try and minimize my back pain, and had as good a journey as was possible.  In fact, I quite enjoyed my little trip out and we stopped at a farm shop, complete with camels, on the way back for a brew and a cake.  John is the kindest person I think I’ve ever met and I feel incredibly relaxed in his company – he feels more like family than most of my family do.

I got back home at 5.15pm, had a quick hour in bed and some tea then had to head off back to town because it was opening night of the new Camera Club season.  I’ve really missed Club over the four month summer break and, despite my back by this stage being at screaming pitch and my head buzzing and disorientated from over-stimulation, I had a fun night.

Thursday I spent the whole day in bed editing my pictures and managed to get 7 of them printed off.  Then I ran out of photo black ink, which wasn’t a problem because I’d made sure I had a whole set of inks in the wings.  Only I’d been sent matt black, not photo black, so had to then pay £7 next day delivery from Amazon for the replacement.  Bugger it.

I couldn’t do any more prints on Friday because I was pole-axed.  When it comes to the post-exertional malaise from M.E. mine hits 48 hours after I’ve done something so I knew that Friday, and possibly Saturday, would be right offs.

Sure enough I had a migraine on Saturday and all the energy of a corpse.  However, I feel a bit perkier this morning so am hoping to get a few more prints done today – it feels like a weight on my shoulders and I’ll feel huge relief when my submission is ready.

It’s a fine line when you’re chronically ill to set yourself goals but not take on too much.  It just so happens that my distinction has come in the same month as my birthday (always knackering, albeit in a nice way), the fact I’d agreed to judge a photo competition, I’m doing opening night at our beginner’s class and I’m doing a 2 hour talk at another Camera Club!  I’ve way over-stretched myself, particularly as my health usually nosedives at the start of Autumn, and can only pray I’m still standing come the end of October!

Weekly roundup

The first half of my week was dominated by a surprise visit from Aunt Flo, which I wrote about in this post.  I didn’t think it was possible to have a period only 9 days after the last period finished so it came as a total shock.  It wasn’t just some skimpy thing either and brought with it 3 days of migraines and some wicked back pain, neither of which have settled down now it’s all over :-/  I’ve also eaten my own body weight in sweets and biscuits and have kicked the weighing scales under the bed so I’m not tempted to stand on them – I know they’d say things to me I don’t want to hear.

It’s typical I felt so crap because this week I judged my first International Photography Salon and had 2,500 images to wade through.  Usually the 3 to 5 judges on the panel have to meet up at a large venue, the images are presented to them and they have just a few seconds to press a button with their score.  With thousands of photos to look at it often takes hours and the mental effort alone, let alone sitting upright for ages, would have been all too much for me.  However, this time we used online scoring software so I was able to do the judging from the comfort of my bed over the course of a week and I really enjoyed it 🙂

Something brilliant happened this week which, considering I count myself as one of the world’s unluckiest women, made a pleasant change.  As you might remember, my 2½ year old camera broke earlier on this month and I sent it away to Olympus for repair.  It’s been like having a limb missing and I’ve waited anxiously for its return only for Olympus to contact me to say they don’t have any spares and couldn’t fix it.  I was on the verge of slashing my wrists when they offered me an upgrade to the next model for the price of the repair, so I’ve ended up with a brand new £1,800 camera for £132!!  I happy danced round the lounge until my hips asked me what the fuck I thought I was doing and sat my arse back on the couch 😉

There was a headline online this week that Australian researchers have found a diagnostic test for ME which involves a malfunction in calcium ion channels.  I flicked right on by.  Researchers, initially at Glasgow, have been looking at ion channelopathy for two decades and we’re no further forward.   I’ve lost count of the number of times it’s been declared that the answer to ME has been found only for it to fizzle out and come to nothing.  It takes a lot for me to get excited and I’m so unexcited by this news I’m in a coma.

We have rats!  My neighbour pulled me aside the other day to say he’d been stood in the kitchen looking out of the window one afternoon and two rats the size of kittens ran across his lawn.  Sure enough, the next day I was walking up my drive and saw one darting in and out of the plant pots *shudder*.   I live next door to a farm and all farms have vermin but they’re usually nocturnal and as long as I don’t see them I don’t think about them – that they’re out and about doing their ratty thing in broad daylight is just brazen.  My neighbour has put some poison down but my other neighbour puts shed loads of bird food on feeders attached to a small wall and unless he stops we’re never going to get rid of them – the rats must think every night is party night with free food and drink.

Today I’ve invited my bestie out for lunch cos I’m desperate for a conversation with someone who doesn’t have fur and lick their own willy.   Not that Bertie isn’t great company, but he only has three things to say: “rub my tummy”, “feed me” and “are we going walkies?” and if none of those things are happening he spends his days impersonating a rug.

We’re back at Camera Club this week after our four month summer break, hurrahhhh!  But first I have an appointment at the Eye Hospital with my floaters – I’ll let you know how I get on.

 

 

Weekly roundup

I’ve had another mad week.  Why is my life so busy and when is it going to calm itself down?!

Literally minutes after I posted last week’s roundup all hell broke loose.  I was out walking Bertie at 9am when I received a call off my Mum to say my Dad hadn’t opened his bowels for 3 days which we’d been told was a huge red flag and a medical emergency, so we ended up in A&E as I discussed in this post.  However, they couldn’t understand what all the fuss was about and simply sent him home with some laxatives, so on Monday I rang the RVI to see if that advice was correct.  It took them 2 days to ring me back (good job it wasn’t a sodding emergency) then the Doctor I spoke to wanted us to go through for an assessment the next day, but my Dad was having a long awaited cardiology appointment so we couldn’t.  The Doctor seemed most miffed we weren’t dropping everything to do as we were told (if he’d rung us back sooner we would have been able to!), so then decided if my Dad continued to be constipated to just go along to see our GP.  FFS.  Either he wanted to see him urgently or he didn’t need to – which was it?!  In desperation I rang my Dad’s GP and explained we didn’t know whether we were coming or going and she said all was fine, to increase the laxatives and if he still couldn’t poop to ring her back.  But taking double the dose has done the trick and so far so good.  Honestly though, my parents are both nearly 80 and all this conflicting information is really confusing and stressful for me let alone them :-/

Wednesday I had a fire.  I eat my main meal at lunchtime and had put some oil in the frying pan on high to heat up when the doorbell rang, so I turned the ring down to low and went to answer it.  When I got back 3 minutes later there were foot high flames coming from the pan – I’d mistakenly turned down the wrong ring 😮  I managed to shove the pan off the heat with a spatula and then dumped it in the sink, but the entire back of the cooker, walls and extractor fan were black with soot and despite both me and my cleaner scrubbing it numerous times it still hasn’t all come off 😦  It just goes to show how easily a fire can start though.  My kitchen units are solid wood, not melamine, and there is tongue and groove wood behind the stove not tiles – the whole lot could so easily have gone up!

This week I’m judging my first International photography Salon (which I’m able to do from my bed using an online system), so Thursday evening the other judges and I had to go to the other side of the county to be shown how to use the software.  Despite feeling unwell it was actually a fun evening out – I’ve been feeling quite lonely and isolated lately so it was just nice to be in other people’s company and to have a laugh and a bit of banter.

Friday my Dad was through in the city for a heart appointment.  Earlier on in the year he was having bouts of severe dizziness and the GP discovered he had bradycardia, ie an abnormally slow heart rate, so the Consultant has given him a halter monitor to wear for four days and it will be interesting to see if anything shows up.

Friday night I started with a migraine.  It’s so frustrating, because I know it’s coming but there’s nothing I can do to stop it bearing in mind I’m allergic to all the prophylactic drugs.  By 2am it was so bad I felt like I was having brain surgery without anaesthetic, so I caved and took some Ibuprofen.  My mast cells don’t much like it and it gives me tachycardia, muscle spasms and nausea, but just so long as I don’t have full on anaphylaxis I’ll put up with that if it relieves the head pain.  Of course, my fear is that one day it will develop into anaphylaxis so every time I take it I’m petrified.

In the end I only managed 2 hours sleep and the next day my head was still banging, which was a bugger because I’d arranged for a new lady who joined our Camera Club before the summer break to come to my house.  She wanted to enter the print competitions but didn’t know how to mount her images, so I offered to show her.  Her experience so far of our club has been that people are cliquey and unhelpful, which is mortifying as I thought we had a very friendly club, so I’ll feed that back to the powers that be.

This morning my head is still hurting and it looks like I’m having a period despite only being on day 13 of my cycle!  In addition, my back has been a bitch all week and I have had rampant insomnia which is now getting old – I just want some goddamn kip.

In between everything I’ve made a Herculean effort to finally finish the 15 images I’m using for my next photographic distinction and they are now being critiqued by photographers much better than I.  I’m so relieved to get them done because the deadline is only 6 weeks away and I was starting to panic.  Of course I still have them all to print off at A3 size and mount, so there is still tons of work to do – I just pray my 10 year old second hand printer behaves itself because it’s been playing me up lately.

The most surreal moment of the week happened last night.  I’m lying in bed feeling like death warmed up when this floats past my window – I’m wondering if it’s a new trick by the Department for Work & Pensions to spy on me to see if I’m actually in bed and as sick as I claim to be 😉

 

 

 

 

MTHFR Study

Back in 2016 I became aware of a gene study in which researchers at the Institute for Neuro Immune Medicine were hoping to put together a genetic database of over 10,000 patients with ME/CFS so that genetic information would be available for researchers looking into the cause of the disease.  Luckily I’d had my genetic data mapped by 23andme years ago so I was able to participate in the study which simply involved filling out a questionnaire and sending off my RAW data via email.

I heard nothing for 2 years and then this week received a message to say that I had a MTHFR mutation and researchers were interested in studying this.  Up to 50% of the population may have a MTHFR mutation and it doesn’t mean you are going to develop a disease.  In fact it usually has no impact on health at all, though it may predispose people to certain illnesses if other environmental factors are present or mutations in related genes are found.

Amongst other things, the MTHFR gene is responsible for the conversion of folate (also called folic acid or vitamin B9) from the food we eat into activated folate.  When the MTHFR gene is mutated this conversion doesn’t work as well and can result in a folate deficiency.  Activated folate belongs to a group of ‘energy’ vitamins and a deficiency may produce fatigue and cognitive changes.

The new study would involve taking a L-Methylfolate supplement (the active form of folate) for 3 months to see if it had any impact on symptoms.  Unfortunately, however, as the research involves a blood draw it’s only available to people living in the United States so sadly that rules me out which is a shame as the fact it doesn’t involve taking drugs means it’s probably the one study I could have taken part in!

My only concern with much of the current research into ME/CFS is that it focuses on fatigue, and while fatigue is obviously a large part of the disease ME is not chronic fatigue.  It’s characteristic symptom is post exertional MALAISE.  I feel ill when I’ve done too much (in fact, I feel ill most days of my life) and it’s this researchers need to study.  If I’m on the computer for too long I start to get a sore throat and if I walk too far I start to feel fluey – I’m not simply ‘tired’.  As there is no diagnostic test for ME many people with chronic fatigue of unknown cause have been diagnosed with it and it’s sadly become a bit of a dumping ground which can only muddy the waters for researchers.  If you take a L-Methylfolate supplement and suddenly feel loads better you didn’t have ME in the first place, you had a folate issue.

While the MTHFR gene has other functions and may be implicated in cardiovascular disease, I personally don’t think MTHFR mutations are going to be the answer to ME, at least not unless they have some kind of massive impact on people’s immune systems we as yet know nothing about.  That’s my take on the situation anyhow but then I am a cynical old timer 😉  In fact, I wrote a post about MTHFR back in 2015 which states my views on the whole MTHFR issue – be warned, I’m not exactly on board the MTHFR band wagon.

ME aside, if having a MTHFR mutation can make you tired that’s obviously not a good thing when you already feel like the walking dead.  Luckily folate rich foods naturally contain the active form of folate and studies have shown that a folate-rich diet can match the homocysteine-lowering effects of a L-Methylfolate supplement.  My diet is already quite rich in high folate foods, such as beans, lentils, broccoli and mangoes though if you have a MTHFR mutation and are unable to eat folate rich foods it might be worth taking a L-Methylfolate supplement but be warned they can have side effects which you can read about here.  Personally I’m not giving the whole MTHFR mutation a second’s thought, that’s just my personal choice.

If any of you would like an informative, easy to read guide on MTHFR there is a decent one here.

 

Weekly roundup

This week has been stupidly busy but much of it has been fun and if only the payback had some kind of fun side I would have enjoyed it.

Tuesday I drove my Dad 90 miles to see the Spinal Surgeon about his bad back, which would have been a tough day in normal circumstances but was even tougher considering I’d woken at 4.15am that morning and simply couldn’t get back to sleep and my period arrived while I was eating my breakfast.  It’s as if my body knows the one day I need to be on top form and deliberately rebels.  Then there was a fatal crash on the major trunk road which blocked the road both ways for hours, so we had to do a detour all round the houses which put us under pressure to get to the appointment on time.  However it all went well, apart from the fact our local hospital hadn’t sent the results of the MRI scan done the other week, and my Dad is now on the long waiting list for surgery.

Wednesday was both my Dad’s birthday and my Niece’s 21st.  My parents and I went out for lunch and then we all went to my Brother’s house at night for a bar-b-q, which would have been lovely had it not absolutely chucked it down.  So there were 25 people crammed in the lounge in boiling, humid temperatures while my poor Brother stood under a parasol outside cooking.  I struggle with these kinds of social situations.  There were kids running amok, dog’s excitedly barking and everyone talking at once.  My poor brain was so over-stimulated I was seeing stars and the fact that, once again, I’d been awake since 4.30am and I had my period which always makes me feel rubbish really didn’t help the situation.  By 8pm I was on the verge of collapse so had to come home, though of course my family know I’m not well and I think my Niece was just pleased I’d made the effort to go at all.

Thursday I felt like road kill and didn’t make it out of bed.

Friday my car was booked in for its MOT which meant hanging around in town, so I arranged to meet a friend for lunch while it was being done.  I then had to hare back home for an appointment with a builder – more on that in another post.

I should have spent the weekend in bed recovering like a responsible sick person but there was a Viking event on at a nearby Castle which was too good a photo opportunity to miss, so on Saturday I met up with a Camera club buddy and we took a few snaps before retiring to the cafe for hot chocolate and marshmallows, which was delicious but may be the reason I’ve woken this morning with a stonking headache!  I feel like absolute crap today but that’s to be expected after such a busy week.

In between everything I’ve started to panic over the fact that I need to get my arse in gear in respect to my photography.  I’ve decided to try for my next Distinction and there is a shed load of work to do between now and the October deadline.  Having borrowed a friend’s camera I have managed to finish my latest creative picture, though, which is great as it’s going to form part of my submission.  The standard of the Distinction is really high and to be fair I probably won’t get it but nothing ventured nothing gained.  I’m also doing two talks in October and really haven’t given them much thought, so really do need to get cracking as the time will fly by.  The next 2 months are going to be the busiest of my whole year and I just pray my body and brain holds out!

 

The M.E. Show

I’ve been awake since 4.15am and feel like death warmed up so this is just a short post to share details about the M.E. Show for those who don’t know about it.

Gary Burgess is a journalist and broadcaster who was diagnosed with M.E. last year and decided to do a series of podcasts on the disease.  There have so far been 10 episodes, each containing different guests speaking about various aspects of the illness from life with severe M.E. to advocating as an MP in Westminster.

You can find more about the podcasts on the ME Association’s website where you can also listen to all 10 broadcasts.