Still struggling with fluttery heart and attendant nausea, dizzy spells etc on top of all usual stuff after lengthy hypo week last Saturday.
Could only walk very short distances, very very slowly at weekend. Mum actually said she'd not known me so slow for as long as she could remember. She has just gone to make appointment with my GP to check out that all OK in cardiac department as she puts my prescription in.
Had flu jab on Saturday morning. One of the male GPs at practice, giving the jab, listened empathetically to my usual "Diabetic - yes, M.E.- possibly no" dilemma. He obviously saw the possible past problems with the flu jab in my case as signs of a weakened immune system. He took M.E seriously, even if he had no answers. He seemed interested in my 50th birthday invitation to raise funds for bio-medical research so we'll one day have the answers. Had the jab anyway, but he was supportive and understanding, which I always take as a sign of progress and hope.
Everything feels swollen. Sore throat. Can't think of words. Can't remember stuff that's obvious. Blood sugars through roof much of time since jab. Burning hot patches in limbs, organs, torso. Left eyelid swollen and eye sore. Shivery. Diarrhoea intermittently, then gone. Scalp and neck sore. Dizzy. Nauseous. No real appetite. Balance way off. (Using stick in house today). Exhausted just breathing. Feeling compulsion to lie down on floor wherever I am. Too jerky and hot to sleep through night.
Just a normal M.E. day (not) at the office, I suppose.
Quite a few good folks and friends wanting to call by this week to mark my 50th on Friday. Then I've promised a service in the village where I was born on Sunday. I have to be well enough for that hour, plus lunch a dear old friend has offered afterwards. Need to see another friend who is terribly sick over the weekend too while I'm over there. Looks overwhelming from here at the moment, but nil desperandum!
So I'll leave it there for now and get properly horizontal again.
Look on the bright side - when you're flat you can't fall any further!
Well, after Saturday evening's loss of two hours of my life to extreme hypoglycemia, it's put me back quite a bit and been all but housebound since.
The temperature here in Yorkshire is hitting the mid seventies, so it would be great to get outdoors more to take advantage. Managed one wobbly stagger down the garden to see the golden leaves from the Ash and Cherry trees banking up on the lawn. So beautiful. The birds are going barmy for the balmy, enjoying this warm snap, chasing each other in the sunshine. A few weeks ago, my Mum heard a lady proclaim that "You don't know what to wear! We shan't have any more weather!" Premature, it turns out!
This week, my occasional tachycardia has become a much more frequent companion. Like other visitors, it really should have warned me it intended to call! I'd have changed the locks, had I known! So much so, accompanied by dizzy spells and greater than usual difficulty making sense of ordinary stuff and concentrating, I've actually promised to go have myself checked out by my GP.
"Well," said one well-meaning well wisher, "it may be a recognised M.E. symptom, but they can give you things for it these days. You haven't told them, recently."
I know. I never go to the GP now, unless forced to, any more than I did before I was ill with M.E. I have to be seen regularly about my diabetes in any case. Forgive me if I'm less than hopeful of getting help with the tachycardia. Any more than the GP has been able to relieve my pain. Or disperse my grinding, draining exhaustion. Or keep my stomach and intestines from having a life of their own. TMI. Or do anything but pack me off to the M.E. (for that, read CBT/GET) clinic in Sheffield soon after I was first diagnosed by the immunology department at Sheffield Hallamshire Hospital. Then no more. No further intervention. Except to write 'M.E.' on my records clearly, a few years on.
But I care about the people who care about me, so I will make that appointment.
Even less welcome is the annual flu jab at my local surgery this Saturday. Every year now I have to debate, all alone, the pros and cons of having it. So many years it has lead to me being profoundly ill afterwards. It is still one of the most likely looking candidates, unofficially, for contributing to my complete collapse into M.E. in October 2005.
Shall I? The diabetic advice says "Yes".
Shan't I? The rather shaky M.E. wisdom says "No".
A friend whose husband is terminally ill with emphysema, on oxygen, will not have the flu jab these days, though all the advice from medics tells him to do so. My friend says, though I haven't the facts or figures personally to back this up, that GPs get £40 per every flu jab administered.
Anecdotal evidence names a GP who actually stopped one of his patients in the street as he drove away from an appointment where he had given another patient her flu jab at home. He urged the pedestrian patient to get into his car, and gave her the flu jab there and then. £40 is tempting, whatever the dare, true, kiss or promise of it.
Every time I approach the subject of how ill the flu jab has often left me within days, the old line about "it's a dead virus, it can't give you flu." is trotted out. Apart from one wise nurse, who could only say that it was up to me.
It can't give us flu. No. I know that, thank you for asking! I'm not saying it gives me flu! I'm suggesting that something seems to be happening with my immune system that reacts to whatever is in the shots. Perhaps that's why it does vary year to year. I don't know. I'm not the expert. Seemingly, nobody else is either. Again, from a very low ebb to start with, I must decide whether to take the plunge and line up for the injection.
Then I'll make my appointment for the tachycardia. I fully expect the tests, if done, will make me look like a malingering idiot as usual. Or perhaps, even at rest, relaxed at home, the fluttering, nauseous, dizzying sensation is "all in my head"?
Sarcasm over. It's a beautiful day outside of these four walls!
Just read an interesting post on another excellent blog here:
niceguidelines.blog
There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.
This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.
This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.
I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.
A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!
Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!
Well, another year dawns! From my own experience and from listening to others with M.E., I know this time of year can be a tough one.
After the frantic preparations in the lead-up to Christmas, many of us can overtax our strength and immune systems before we even realise it, until the "crash" comes and makes us lay down our arms for a while! The line between "doing" and "being" is a subtle one, but an essential part of our armoury in combatting and living through this persistent, sapping disease.
Since my last blog post in October,
I've certainly had my ups and downs. I was overjoyed to discover one of my short stories, "The Butterfly Wall" was to be published in the January edition of "Writers' Forum Magazine" here in the UK, and kept busy on my better days through November, when brain-fog was at a minimum, writing the first draft of my new historical novel. At about the same time I was hit by a virus which meant I was too unwell to attend my GP's annual flu jab fest. Every year it's a dilemma of "ip-dip-my-blue-ship"* as to whether I should have the jab or not.
Most years the flu jab has preceded a huge flare-up and worsening of my M.E. symptoms. So I wasn't in a hurry, once I began to pick up a little, to re-book the appointment. Even the nurse at the practice agrees it is difficult to advise what's best: as a Type 1 diabetic, I am in the "at-risk" group who are advised to get immunised, but as an M.E. patient, my immune system has ideas of its own that can make the jab less than helpful! (Solution - don't be greedy enough to have both conditions concurrently!)
However, I have now booked my shot for next week. I know at least 3 friends in our local area have been hit by severe, life-threatening Swine Flu in recent weeks,
so I feel it my duty to have the jab, whatever effect it has on me, in order to protect those close to me. My mum's own health, always resilient even at 79, was compromised by the month-long saga of my failed boiler (as Facebook friends know only too well - zzzzz!) through the coldest winter in living memory, to the extent she has developed shingles in her head and the added extra side-effect of Bell's Palsy, so I refuse to put her or others at risk of catching flu from me just because the jab has adversely affected me in the past. The current jab formula claims to protect against Swine Flu, too, so perhaps it will be worth the risk this year. I hope so.
Then, the day after I finally decided to book the appointment for my jab, the national news revealed this week a shortage of the flu vaccine in some parts of the country. There's still time to race me for mine, if you're desperate - five injections a day is plenty for one body, already, if you ask me! Just call me "Pincushion"...
*
The phrase "ip-dip-my-blue-ship" comes from a playground game we used to play at infant school in Yorkshire in the 1960s. The rhyme goes:
"Ip-dip, my blue ship,
Sails on the water,
Like a cup and saucer,
Out goes YOU!"
I've read about other variants since then from all parts of the country. The rhyme accompanied the counting round of the participant children's legs until the last person counted on "YOU" was out of the running for being "it" or "on" in the subsequent chasing game. The phrase is still used in my house (by me, anyway!) to express the horns of any dilemma!
