Tag Archives: fibromyalgia and myalgic enceph.

It’s time to stop annoying my children.

A few things have happened this last week or so that have conspired to make me stand back and realise that it is time I stopped annoying my children. (Well, perhaps not completely…but…)

The first two things that happened were my oldest daughter went to stay with a friend for a couple of days and a friend of mine was writing an essay on the subject of “Loss” as part of her NCT training.

Iona, going away for a couple of days in no way bothered me at all. As a mother, knowing where my daughter is/was I was relaxed. It didn’t occur to me that the same wasn’t true of her.  Meanwhile my friend’s battle with her personal fears about losing a child, or anyone she loves, particularly if it was sudden, as she wrote her essay had also surprised me. I hadn’t known she struggled with this fear. I don’t think this is an irrational fear, a lot of people go through it and often, as in my friend’s case, it is rooted in a soul wrenching event from the past. Taking the opportunity to face it through the essay showed real courage. Most people – especially British people I think- prefer to duck these issues.

So, why did these two things conspire to make me think about my own behaviour?

Well, Iona came home with her friend and I was sitting there unable to breathe. I’d had the day to myself as Heleyna’s godmother had taken the children shopping and brought them home with lots of new clothes. I had decided to use the quiet to have a shower, only I couldn’t make it upstairs, so I gave up.

I had already been to the doc as an emergency a few days before and had been booked in forrenal and cardio bloods in another three days so I got it into my head that I could hold out to then and see a doc when I went for bloods. Yes, I was being utterly irrational. I had allowed my hatred of going to the doctors to over-ride any good sense I might have.

My daughter was cross. She put her foot down and organised me another emergency appt. She called the taxi and asked her friend to stay with the children.

Off we went. Then she had to arrange for my son and daughter-in-law to take over from her friend while she stayed with me at the docs as I was on the nebuliser. To be honest, I felt so ill, but I was squirming with embarrassment that Alex and Anna had to come over for the children. Why? I have no idea. It’s not like they would resent having to help out.

But this is one of the reasons I try and avoid doctors. I have to struggle with a taxi and alarmed drivers who prefer their fares to be breathing properly it seems, and someone has to be there to take care of the younger ones. It might not seem like much; but when you are very ill and have brain=fog to boot, it feels like a massive legistical nightmare.

Iona then said something, that right then, I didn’t really appreciate. She said she knew she would face a problem when she got home because I was just finishing the steroids before she left and they weren’t helping. A while later I realised, that instead of having a great, relaxed time with her friend, she was thinking about what she would face from her recalcitrant sicko mother when she got home.

And then it occured to me that the reason it hits the fan so often is because I keep thinking I don’t need to go to the doctor. And the reason I keep thinking that is because I HATE going, not because I genuinely think I don’t need to go.

There are many and varied reasons why I try to avoid doctors, but this is still no excuse for putting my children through it, just because I can be a stubborn cuss. So my Spring resolution is that I will attend medical appointments when I need to rather than wait so long I have to be shipped in as an emergency. I will do this. Honestly…no, honestly I will.

Where did my spoons go?

I had a few spoons and now I don’t seem to be able to find them. Perhaps they designallare under the bed. I told my chiropractor that I was tough, and honestly I think I must be, cuz right now I feel like I am getting through a day clutching a single teaspoon. I think it should count as a proof for the existence of God; the fact that I am spoonless and coping. It’s one of those missing verses from Scripture “Amen, I say to you, though you have only a rusty teaspoon, I will give you spoons,” And He does.

If I sit still I can breathe and feel pretty ok – but it’s not a particularly useful way to be. As soon as I start moving around I become breathless, and cough like an old woman who just gave up smoking. My voice comes and goes rather randomly. I am sprouting a rather picturesque butterfly rash across by already puffy face, and my legs are doing their own Dulux advert in shades of white then blue then purple.

I have terry’s nails and mild beau lines. I find this a fascinating “sign” as it must be how doctors could dx patients before the massive over-reliance on machines began. I can’t help wondering sometimes if those medieval monks had a better understanding of sickness and sick people than our modern machine-obsessed medics.

My pain levels are pretty good.; thanks to Amitriptyline (50mg) and the chiropractor. Amitriptyline is prescribed “off label” for all sorts of chronic pain including migraine and back pain. It is prescribed at less than the therapeutic dose for depression (it’s on label use; although hardly any newly dx people with depression would get this as there are new antidepressants to choose from). The max dose for pain is 75mg usually.  It doesn’t kill the pain completely but the side effects are nasty so you don’t want to be on a higher dose unless the amount of pain outstrips the side effects. 50 mg for me keeps a reasonable balance. I have confessed on here before that I also take pink migreleve. This is only in times of definite necessity as Migreleve and Amipriptyline are contra-indicated. I never take them at the same time; and always leave a few hours from one to the other. As I already have had seizures I’m not in the business of inviting more.

I do believe that if you can get pain under control, it’s much easier to cope with eveything else. If you are facing a wall of symptoms and don’t know where to start – I suggest you start with pain management and control.

Since the meds adjustment (candesarten) my blood pressure is under better control.  My heart rate is better as well. So all those drugs I swallow each day are doing something. I’m taking CoQ10 and Magnesium to help boost it all.

The Cardiac Insuffiency theory of ME/Cfs suggests that lack of CoQ10 could be at the root of the heart failure problems in so many patients. Bloods taken from those lucky few to test this come back with low CoQ10 and show mitochondrial dysfunction as well

I am needing to sit up at night so I am using a V shaped pillow. These are great to support you (got it for breastfeeding originally) and help prevent sliding down the bed too often with the waking up gasping for air bit.

Bloods taken to check for renal and heart failure.  I intend to ask for ANAs to be done soon.

Meanwhile I shall clutch my teaspoon and carry on. I have a spoon (sometimes) and I’m not afraid to use it.

The stigma of ME/cfs. It’s a mystery.

I have read this well presented view of the horrible stigma that comes with a diagnoses of ME/cfs. If you know someone with ME this is the article to read. It’s long but worth the effort.

photo-from-we-campaign-for-meThere should be no stigma attached to being ill, but we live in weird times where one illness, which might get media attention, means compassion and another which gets negative media attention is treated with contempt and of course that means those who have the illness are treated with contempt.

Schmid gives a list of possible reasons for the stigma attached to ME. The first one she notes is “symptoms come and go.” There are plenty of other diseases in which symptoms fluctuate so people who use this excuse to hang their meanness on are on thin ice. Even cancer patients going through chemo have good days and bad days.

There are so many symptoms; this is simply because the disease is system wide. The sad fact is that the way modern medicine has moved means that a patient needs to have one or two very obvious symptoms that show up, preferably, on a simple blood test or at most an x-ray and can be treated by one of the astonishingly narrow specialists.

A patient with a system wide disease that it attacking just about every part of his or her body is just too difficult for these doctors to cope with.  The huge emphasis on holistic care and multidisciplinary working that I was trained in back in the 1980s was ditched almost before I qualified in favour of some kind of bizarre market model where the cheaper the disease the better.

Some of the symptoms are bizarre (writes Schmid) and this is certainly true. Some of my most bizarre symptoms I have never even mentioned to a doctor.  As Schmid points out most of the bizarre end of things come from disruption of the nervous system, but neurologists don’t seem to have a clue about them.  She writes about Floyd Skoot’s “Xerox machine” default word. Most of us have this. In my case it’s “dishwasher” or more recently “wishdosher”.

Despite the noted deaths from heart attacks due to heart failure and the shocking number of suicides, those with the disease are still treated quite simply rudely and even cruelly by most doctors.

She goes on to speak on how medics need educating about the nature and seriousness of the disease. All that is true. But I still want to know WHY this disease, more than any other, gets such appalling treatment.

I read Osler’s Web and although Ms Johnson gave a solid and well researched testimony about the politics and shenanegans that began with the Tahoe  Incline Village in America outbreak in 184-5 but when we know that it wasn’t just Cheney and Peterson who were asking the CDC to come and investigate. Dr David Bell says he did and they refused and then he discovered another doctor with a similar cluster outbreak who couldn’t get the CDC to respond either.

WHY wouldn’t they? Something made them determined not to investigate right at the beginning, before anyone from the CDC had met any patients at all.

The debacle soon spread over here and the comedy duo Wessley and White labelled it with a fake psychiatric label.  While this has certainly feathered their nests and got them in with the elite crowd, I still can’t see why this has been enabled?

There are quite a few diseases out there that have a stigma attached. Ask anyone with Schizophrenia how the world and it’s dog treat them. But I have never before come across such a serious disease, where the stigma is rooted in so much  spite.

And of course lies.

Doctors have always been willing to shove the truth under the carpet, but to tell a bare faced lie; I think  that seems to be a speciality wih ME patients. I think the very worst lie I was told, was by the neuro who saw me at the beginning of all this who categorically insisted I would get better within a few months.

When I began to go into a remission for the first time I really believed that this was it and I would be well and back to normal soon. When I crashed again I was confused and when it happened another couple of times I was devastated. Yet no neuro went back on that lie. They just repeated it.

Now that I have done the research and I know what fibro, ME and dysautonomia can and does do I am much stronger and able to cope with what it does do.  No one deserves to be lied to about how their chronic illness is going to go.

It’s okay to be angry and frustrated.

H/T Living With Bob blogspot

H/T Living With Bob blogspot

I am angry and frustrated. So, I guess I would say it is okay to be angry and frustrated. I am not beaten…yet. But sometimes getting a grip of what’s really happening and not hoping for something that can never and will never happen is so darn difficult. But I am supposed to be the “brave cripple” the “doing okay chronic” the …I dunno what I’m supposed to be to be honest.

I saw the new Cardiologist at the end of October last year. He was nice to me – which was a new experience all by itself. He said he would help me. I waited nearly two months and then had a 24 hour ECG. That was five weeks ago. After a couple of days trying to phone the hospital – and remember peeps, that takes up some of my precious spoons leaving me with less for the children and home.  Finally got them to take a message and to my utter astonishment the Prof’s secretary did actually phone me back the next day.

She said the ECG would be on his desk by today. (yep 5 weeks after the event where I was told results would be 10 days to 2 weeks). He will look it over in the next few weeks and I might get an appointment sometime the end of April, more likely the middle of May.

I know very well that for a full dx I need further tests; epinephrine and norepinephrine levels and possibly (though I doubt I’ll get this) standing dopamine levels. Cortisol and other adrenal function needs testing and going bt the massive yoyoing of my BP, I should be tested for baraflex failure.

So, chances of getting help in the next year or even 2 years looks unlikely; if it ever happens.

This is made a little worse by the fact I am watching someone with ME (although I suppose only have ME makes things simpler) who under private care is getting better.  I don’t begrudge him this – I am really pleased for him. But it’s a bit wallflowerish watching the progress of someone else (who hasn’t been ill as long as me) while I am still slowly, but surely, getting worse. It’s just much harder to get through each day.

I have to accept that I can’t function in the afternoons, or much in the evenings unless I sleep in the afternoon, which was happening because I couldn’t prevent it – but now is back to just unbelievable fog and slowness and just can’t-do-itness.

Self pity is ugly, I know that, and I know, after this small surrender, I will grab back at the weapons and go back to fighting this multi-headed monstrosity of a disease set. It hasnn’t beaten me yet.Hydra

But I don’t think I should have to fight every day. Sometimes I need to be angry, fed up, frustrated and even be allowed a quiet cry in a quiet corner. If you are going through this too, then I know you will understand and be grateful you are not alone; honestly, you are not alone.

If you aren’t and you don’t – then please don’t judge and keep it to yourself will you?

PS Dysautonomia Prison has changed sites so this is the new site place

Dr Julia Newton’s research in the UK!

In Newcastle Dr Julia Newton has been doing some proper research into ME/cfs. Her findings are interesting and show that autonomic disorder seems to be pretty universal with this disease. She is hoping that her work on dysautonomia in ME may provide us with a straightforward biomarker for accurate dx. But she is sensible enough to note that ME is a very complicated disease with a range of disorders co-morbid within it.

Dr Julia Newton’s lecture with slides is available here. This is the same lecture given at and Action For ME meeting. She entitles it Standing Up for Fatigue after the brief intro she starts talking at 2 mins 6 secs in.

A Phoenix member has worked hard to provide a pdf transcript.

I would like to see this genuine researcher get an award, but that is highly unlikely. It’s still a massive fight to get the funding for the research!

Perhaps she should suggest workhouses for really annoyingly sick people. Then she’d get an honour or two.

Dr Newton is taking muscle cells and testing them in her lab. From this hopefully some more proof of Post Exertional Malaise can be found, and perhaps a treatment. (I am living in hope). PEM is one of the most debilitating aspects of this disease. It’s what a lot of us call the “crash”. It’s not just feeling tired – whatever some eejits might say, it’s brain fogging, body lead like utter yukkiness.

Dr. Snell who has a background in sports medicine has done some fascinating research on this area.

There are members of Phoenix Rising who have volunteered for follow up studies on PEM. Knowing what it feels like I have to say I applaud their immense courage.

Sorry to do two MEcfs FM Dysautonomia posts on the trot, but it’s good to see real research happening even while the British Government reward those who block it’s application.

I saw the Cardio on Oct 29th and had a 24 hr ECG 13/4th Dec and finally managed to get through to the hospital today where I received a promise that the  Professor’s sec would phone me tomorrow. I’ll be amazed if she does.

I am awake during this afternoon’s crash which is better than it has been!

Humility verses indispensability.

Pride is an ugly sin and is at the root of all sins from the moment Satan said “Non serviam” that is “I will not serve,” pride has been causing bad things in God’s good creation.

Now back in the good ol’days of the Church, before life got soft sometime in the fourth or fifth century, there were no confessional boxes with nice anonymous grills. Oh no, none of that. People confessed their sins before the priest and anyone else who happened to be there. There was often some pretty public penances given as well, especially for public sins. Even kings were told to wear sackcloth and ashes and walk a pilgrimage or two.

If you’ve read Sigrid Undset’s Kristin Lavransdatter (a wonderful trilogy which I highly recommend) you will have seen that Kristin walks a very public pilgrimage in penance for her sin against God and her father. (See how careful I am not to put a spoiler in for those of you who haven’t read it yet :) )

So I will make a confession here. I have caught myself with a very subtle type of pride and its about being indispensable. My terrible fear of not being useful. God is curing me of the disease of indispensability by having me be really ill. So, good things do come from being ill.

I noticed this pride as Christmas came and I just hadn’t done all the things that I usually do in preparing, cooking, wrapping, getting good presents for people. I like Christmas to be just so, and very special so in the past I’ve spent hours, staying up half the night wrapping, arranging and God knows what else.  It all sounds very generous and kind doesn’t it? But in fact I got a lot out of it. People saying how wonderful I was at all this.

dys 12So this year has come as a hard lesson. I can’t do it all. In fact a lot simply hasn’t happened. Christmas cards didn’t happen until the last minute and then only some cards. I didn’t cook enough so there are people without the usual chocolates, chutney’s cakes and sauces. Iona has made a lot of really lovely things, but usually we did it together so a lot could be done quickly.

Wrapping presents defeated me in the end and I just had to cave and go to bed (pulse hit the high 130s as I tried to get the washing done as well). Iona and Josh stayed up and finished the work.

Alex and Anna have been over to help with the final preps and making the Christmas dinner. There are other people who can take up the slack in the rope. I am grateful, but also it upset me. See? It wasn’t just about getting it done – it was about me getting it all done. I have to be useful.

I wanted to be doing it all. I wanted to be the queen of Christmas, making it lovely for everyone and basking in pride. Oh dear me. Now that I can’t I am learning a new humility.

I suspect this particular form of pride is mostly a woman’s problem.  Many of the saints were hidden little people who spent a lot of time being very ill. I think I need to remember that next time I am getting frustrated over what I can’t do.

I came across a fellow ME patient a couple of days ago who said she was lucky in that her family took care of her and made sure she could both cope with and enjoy Christmas. They accept she is very ill and don’t try and force her to perform. A little ruefully she said she wished she could offer something in return. Looking at her, I thought, well you are offering something. You are offering your family the opportunity to take care of you. All those people at the last judgement standing on Christ’s right hand had been feeding the hungry, giving drink to the thirsty caring for and visiting the sick and those in prison and so on. If there were no sick, housebound, imprisoned, hungry thirsty and naked people- how could they have done all that?

DysautonomiaPrison.comTidbits

DysautonomiaPrison.com
Tidbits

I think when it comes to us sickies and cripples when we stand (before by then we will be able to!) before God, He won’t ask us so much about all the stuff we couldn’t do, He will say, “Did you accept the people I sent to help you? Were you kind and polite and patient with them?” And of course, “All those people who wouldn’t help, left you to struggle and made life even more difficult; did you forgive them?”

So, fellow mothers out there watch for this sin of pride. Don’t learn with the holy 2×4 as I have done this Christmas. Learn from me. I like the saying that any fool can learn by his own mistakes; the wise man learn’s from other people’s.

FMS/ME/POTS/Dysautonomia – remission.

I’ve been feeling better the last five days or so, and I have been enjoying the little oasis of having much much fewer symptoms, including much less pain. Lovely.

My BP is still unstable but my pulse and sats are so much better. In most chronic illnesses there is a pattern of remission and relapse. But in the system wide ones it’s a difficult thing to measure. I’ve noticed that many people get that few days of remission that is so welcome to us all; but others can go into almost or actually complete remission for months on end, and occasionally years.

As far as I know, there is no research on what causes remissions. We don’t know what causes them, why some people get good ones and others get little ones. We don’t know why some people only get partial remission and why some never get a remission.

Today, five days into my little oasis, the pain is back and my BP is shooting upwards again. Nevertheless my POTS is still in abeyance. I can stand up without blacking out or feeling sick, and my pulse is staying below 12o. Lovely stuff.

Back at the beginning of this disease (10 years) doctors told me quite clearly that it would all just go away. I believed them. They lied with the sure knowledge that they could do so. I am still astonished by the number of outright lies doctors feel able to tell patients.

This lie was a particularly mean one. After a while I began to feel better. I could manage a little more and the foggyness in my head was better. I thought I was getting better.  More and more symptoms began to lift and I was so happy because I thought I was about to get my old life back. I made plans about getting rid of the crutches and wheelchair. I couldn’t wait. So I pushed myself. Walk a little more, do a little more, keep it going. And of course I crashed.

Doctors shrugged it off or said I needed to try harder.

It took a while for me to learn that doctors should be ignored and never trusted. But I learned. Doctors should not get away with such lies, but as they do, it’s best to treat the things they say with extreme caution.

I now know the little remissions I get are not a sign I am getting better. But I am not made unhappy by this. Now that I know what I am fighting I can fight it realistically. The truth really does set you free. I can enjoy the oasis of remissions when I have them and they do mean I can get more done around the house.

Now I know some of you will be shouting at the computer at that sentence. I admit I do bring on a kind of boom and bust cycle because I use the remissions whether mini ones or pretty good ones like this has been, to do more. I know lots of advice saying pace carefully and keep remissions going, but I don’t know how long a good patch will last and in the bad patches which have been very bad indeed recently I don’t get nearly as much stuff done as I need. It has to be done sometimes – so remission moments are when I catch up. Does this shorten remissions? I don’t know – possibly. But there’s a balance to be had between trying to be less sick and trying to be a wife and mother.

I’ve read a lot of people’s stories over the years, especially more recently since I decided to get hold of the research and see what is happening out there. Lots of people have talked about losing friends and family because of how sick they were/are. For as long as I am able I will do the things that are part of being a wife and mother, especially a home educating mother. It’s important not to let the disease decide who I am.

(crashed this morning. Well it was good while it lasted :) )