Sad and Guilty for my Caring Husband

My wonderful Growler got back on his bicycle in the last year and enjoyed it so much he decided to take on a big challenge. A 140 mile ride from the west to east cost of England over 2 days.

He has been training hard and asking people (mostly from outside of the ME/CFS world) to give ten minutes rather than money. With their time he would be asking them to read an article, sign a petition or perhaps write a letter in support of ME/CFS and of carers.

The ride is in 4 weeks. He’s just announced publically that he won’t be doing the challenge.

Juggling work, home, caring and training for this incredibly difficult event has proven too much.

As he says it’s ironic that the 2 causes he set out to raise awareness for have been the reason he can not participate in the challenge.

I feel incredibly sad and a little guilty that my illness and debility is at the core of him not being able to do this event which he has worked so hard towards and still would love to do.  But life is what it is.  I can’t magic myself to better anymore than I can take up more slack to help him do this.  I want to desperately but it’s just not possible.

I’ve been quiet.  I’ve been in some odd moods.  I’ve been online shopping a lot – usually a sign I’m trying to find a magic fix to make me feel better, to make life better.  My cognitive problems are showing up again – so far in a minor way but still more present than a few months ago.

The adjustment to Growler being out at work full time has been significant.  And I still haven’t got my daily routines right.  The balance still needs tweaking and somehow I need to lift myself from getting through to living as fully as possibly whilst recovering too.  Too much energy spent on trying to live and not much on resting.

The signs are there. The gland pain in my neck is back on a regular basis.  My getting to sleep and switching off from stimulus is faulty.  Tiredness is bringing more muddled thinking, gaps in understanding and holes in memory.  And tiredness is thick and all around.

It’s time to acknowledge the warning signs before things get any worse.

So whilst I feel guilty about Growler having to drop this cycle ride and whilst it feels that me and my stupid illness have forced that decision, I can’t afford to be too down about it.  Because I’m in a danger zone already. 

I have to find the positives and look to the future and maintain hope.  Hope I will turn around this slight decline, hope I will recover and be well, hope that Growler can do another cycle ride, hope that the people who offered him support don’t turn away when things get tough. 

Hope that people understand that when you say no and smile it can be even harder than carrying on regardless.

Big Weekend

I had a big weekend.  Growler took a few days off over Bank Holiday to have a long weekend and I found myself wanting to maximise on the opportunity to go out.  What I really wanted was to feel “normal”.

Friday Growler managed to squeeze in a long cycle training ride in the morning for his C2C challenge in July (to riase awareness for ME and carers).  Then in the afternoon he took me out to a nearby farm shop with a cafe and craft outlets.  I was grumpy and the tea was grey.  When we got home it all ended with me having a massive cry and an outpouring of unsaid things.  Lots of it I seem to recall about life with ME, feeling isolated, disconnected and a bit useless.  I heard myself asking a big question “If there’s no proven treatment than what do I do?  I carry on, trying not to do harm and keep going along like I am just hoping thing will get better?  Is that all there is?”.

Talking with Growler helped.  Not everything had an answer or resolution but that’s just how it is.  But I had gotten myself to a place where I thought I was really on my own now and Growler was able to remind why that’s not true.

Saturday my brother and his girlfriend came to visit.  We had cake and tea sitting on the lawn in the sunshine.  It was good to catch up.

Sunday my dad came over to help Growler with a DIY job.  We had time to chat and drink tea.

Monday there was a big procession and fair in my local town which I was determined to go to this year.  Growler pushed me into town in the wheelchair and we sat for an hour or more in the sun waiting for the parade to pass by.  I had a good vantage point to take a few photographs.  As the procession approached we got encircled by a family standing behind, to both sides and in front of us.  You can’t just side step someone when you’re in a wheelchair.  It wasn’t a great situation to be in and difficult to know how to tell them to shift especially when the chatter between them was bruning all my brain power.  I did get to see the parade of floats but only fleeting glimpses and it was difficult to get photos as their kids kept diving in front of me to put donations in the collection buckets.

Afterwards Growler took me to the park where there was a fair including stalls, fairground rides and a makeshift arena with various displays.  We had to queque for a while but a security guard let us through the barriers early much to our relief.  It was hard work for Growler as the grass was very long and pushing the wheelchair was really difficult.  We tried to watch the motorcycle display team in the main arena but it was difficult to see beyond the crowds.  Finally he found a spot on a raised piece of ground where I could see a tiny bit.  Someone moved and opened up a bigger gap to see.   People were using it as a path through the crowds so he moved me a bit closer in the wheelchair but not so much to block the path.  Then a huge man came and stood int he gap, put his son on his shoulders and glared at us.  We decided it was time to go.  I was so angry and upset at the attitude some people have.  Like Growler said the man also blocked the view of lots of people standing so it wasn’t a wheelchair thing – he was just rude full stop.  It was a disappointing end to the day.  As we wheeled away I did get to see two of the stunts from the motorcycle team as they first made a pyramid and then did a jump above the heads of the crowd.

After a disappointing end to Monday I was keen to do something fun with Growler on Tuesday.  I wanted to spend some time with him but not feel overwhelmed or too busy.  I was pretty wiped from the weekend though.  So he made a picnic and we went to the local park.  It was a great picnic but I got really cold! The sun disappeared as soon as we sat down on the picnic rug.  But we enjoyed being out together.

I knew when I got dressed to go out on Tuesday that would mean I’d not do anything for the rest of the week.  No painting for instance.

Yesterday (Wednesday) I was pretty wiped.  Today the same.  My mom is coming over to visit this afternoon.  Sometimes her visits leave me very wiped out, other times not so much.  It means I will have seen one of my brothers, my dad and my mum in the same week! Unusual.

Saturday I am going to a wedding of one of Growler’s friends.  Hence needing to take it easy for the next few days.  Although I will have to have a bath tonight so not alll plain sailing.

The trade off for that wanting to feel normal is now feeling run down, wiped out, easily confused and doing the bare minimum. So that’s not exactly being normal.  I hope it’s just a temporary feeling of rebellion against my situation and I can settle into the quiet slow life once more.20080704 bike back wheel

Tick Tock

Not one thing, not the other.  Not better, not as bad – depending on what timescale you use to compare.

Running ME Aware blog was tiring.  Sad that my posts have dried up along the with the malaise.  Gut feeling that change of direction required for effective change.  Catalyst, campaigner, smart media, PR stunts, legal action – not sure what.  May have to settle to back an organisation’s efforts.

Back on D-Ribose properly.  Gastric yuck has continued throughout regardless of D-Ribose intake.  Worried about continuining to pay for it when got a special offer with last restock.

Money I saved on suppliment restock last week went to Just Four Quid.  UK campaign to raise £1 million for ME Research and tissue bank.  Year long commitment to fund raising to give what ever I can when I’m able.

Did some more on my new painting.  Rewarding but sometimes physically tough.  Mostly enjoy being something more than just ill.  Others like having that something to ask after too.  Want to do some autobiographical work but tricky to find enough energy resources to fit it all in.

Spent ages finding lovely dress and outfit for friend’s wedding at end of May.  Now feeling fat and ridiculous.  So hard to change shape when daily care tasks leave me exhausted let alone exercise.  May settle for slightly smart and mainly comfortable rather than dress.  Need strategy to avoid getting photographed.  Maybe keep own camera in front of face?  Possibly wheelchair will make me invisible anyway?

Cat has hyperactive thyroid.  Now on meds.  Explains loss of weight, raging hunger, huge thirst and general cranky attitude.  Now I’m not the only sick one in the house.  But Growler has an extra patient onhis hands.  One can’t get to sleep often til early hours, the other can’t sleep through past 5am.  Poor Growler.

Proud of my Growler training for 140 mile (225 km) cycle ride in July.  Wants to raise awareness of ME/CFS and carers.  Asking people for 10 minutes rather than £10. To read an article or two, write a letter, sign a petition. His bike symbolizes how ME has changed our lives.  We started to ride together before I got really sick.  Symbolic for me too.  That can be told another day.

Having the usual internal wrestle with same old questions.  Do more, do less?  Push for treatment, save my energy?  Who am I?  What’s wrong with me?  Will things ever change?  What am I fighting for, should I fight?  And many more questions.

Being home alone in daytime while Growler works full time changing the shape of things. Only now starting to see it.  Not painting as much as before the full time job.  Consistently more knackered by the end of the day.  Feeling more physically disconnected from the outside world.  No longer able to pick best health times and go for quiet trip out.  Places are busier, opportunites reduced, the time slot takes priority rather than picking best health.  Turning down the chance for not best health is more difficult to do now the opportunities are less.

Highlights lack of other offers to get me out of the house.  For fun or for practicalities.  With the (small but siginificant) extras each day it’s more difficult to pick a good day and directly ask someone else to take me out.  The up side is I’m living in the moment.  The down side is I feel estranged from my past and my future is unknown.

Income has reduced.  Making some of my own money from painting but as said before rate of working has slowed.  Feel I need to paint more to make a modest income but I can only do what I can do.  Growler soothes my worries but I’m stubborn.  Money (a tight budget) stresses me. 

DLA is up for renewal in Autumn which stresses me.  In 2007 it was a bonus.  In 2009 it’s core income.  Want to be able to not rely on needing it, to be free from stress of the subjective assessment process.  But I apply because I cannot care for myself and have need mobility assistance.  There’s a reason I can’t raise my own tiny monthly allowance.  Never thought such a small amount of income would mean so much.

Thought I lost my friend.  That ME had left me being a crap friend and life had moved on without me.  She rang this week. Asked me and Growler to be her two witnesses at her wedding.  Just the bride, the groom, parents and us.  Gobsmacked and so moved that of all the many friends they have they asked us.  Maybe I am still a person and not entirely socially crippled by ME/CFS.

So good stuff and bad stuff.  But not one thing or the other.  Life in the grey area?

D-Ribose Free for 10 Days

Ten days ago I stopped taking my twice daily 5mg 5g doses of D-Ribose to see if it had any impact on tummy troubles I get. After reading my post about possible side effects and contraindications of D-Ribose fellow blogger and ME-ite Ashy decided to stop taking it too for a few weeks to see what, if any the effect was.

After ten days the most noticeable thing is how much of a boost it seems to give me. Something I had been taking for granted.

My recovery time from even the smallest exertions is much worse and as the days have passed I’m feeling worse generally.  I’ve had aches and gland pain.  I’ve felt more sluggish in the mornings and it’s taken a 2-3 hoursfrom waking  to feel half human.  I’ve had a lot of pain in my neck, shoulders and jaw from tensing in my sleep and when I get tired.  In the evenings I am often counting down to when I can go to bed rather than enjoying the time I am up.

These are all things that I get from time to time but have not been so frequent or having such an impact in this last year whilst I have been using D-Ribose.

Despite having the desire and mindset to work on my art my reserves have been too low.  I effectively lost all of last week and am struggling through this week.  This usually happens when I am very run down, fighting a virus or have had a significant major exertion (pushing beyond my limits).

I did have a large exertion 13 days ago but it was not beyond my limits. With that level of effort typically I would be over that in 2-3 days, maybe 4.  So by the time I stopped D-Ribose I was pretty much over the worst of it.  I suspect stopping the D-Ribose when I did meant the last part of recovery from it was hindered.

As for the experiment to see if D-Ribose is the cause of tummy troubles (gas, cramps, spasms, constipation, loose bowels and so on) I haven’t noticed any change.  I haven’t had tummy troubles every day, but neither have I been trouble free.  My gastric problems are so far about the same as before.

I realise it’s difficult to know how long to allow for problems/possible side effects like that to settle after stopping a suppliment or medication.  But I am certain the positive effects of D-Ribose have ceased.

My problem now is whether to keep with these conclusions after 10 days and get back to D-Ribose tomorrow.  Going back on it would possibly prove the benefits if my reserves pick up quickly after this fug filled week plus.  But it may not be conclusive about the tummy side effects.

If it does give me the boost I suspect then even if it does cause some gastric side effects it’s looking like a price that’s worth paying.

Can D-Ribose Make You Sick?

I started taking 10mg 10g of D-Ribose daily around a year ago. 

I’ve had quite a few people find my blogs about D-Ribose and reporting to me problems they’ve experienced:

• “a definite small but significant energy boost, but also had tummy pains”
• “a tiny energy boost, but terrible constipation and migraines by the third day”
• “just starting d-ribose and seem to be having reflux/chest pain”
• “started the D-ribose over a week ago, and I’ve had abdominal pain, constipation, and now increased pulse and blood pressure”
• “when I take the D-ribose it makes me feel dizzy.”

I myself have gastric discomfort which although I had experiences before I used D-Ribose it has been persistent throughout this last year. 

pic by HckySo on Flickr

The question is can D-Ribose be causing migraine, dizziness and gastric problems for some people?

The majority of references readily available on the internet, particularly with reference to it’s use with CFS/ME and Fibromyalgia, suggest it is relatively safe and harmless.

The only “reported side effects” I found when I started taking D-Ribose were a risk of hypoglycemia and possibly loose bowels. 

I don’t think that gives the whole picture!

Once other people started commenting on my blog with their side effects, particularly gastric flare ups, I did some more research.  Then today I had a comment which told me that D-Ribose can cause increased levels of uric acid.  I’ve done some more reading. 

I’m not an expert.  This post is a summary of what I’ve discovered so far.

Hypoglycemia & loose stools:

D-Ribose can cause transiet hypoglycemia and loose stools  in reference to large doses (10mg or over).  Dr Teitelbaum’s recommended dose is 3 x 5mg 5g daily for the first 4 weeks, then 2 x 5mg 5g daily after that.

“The first is a transient hypoglycemia (low blood sugar) that can be eliminated by taking larger doses of ribose with other carbohydrates (such as in juice). The second side effect that may occur in some individuals is loose stools. Again, this side effect has only been reported in very large doses, greater than 10 grams.”

 

Herx reaction theory:

pic by coldways on flickr

There are some people who say that the D-Ribose gives your body and your cells the energy they need to function more efficiently and thus fight hidden/chronic/stealth infection in the body. It fuels your mitochondria.

When fighting this/these infection(s) the theory is it is possible you may get a Herx reaction.

It’s also possible that if the D-Ribose is fuelling your body properly you may be better absorbing other suppliments/nutritional elements that are fighting the infection and thus, ironically, feeling worse.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.

From Wikipedia entry on Herxheimer_reaction

More reading on Herx reaction http://lassesen.com/cfids/herxheimer.htm includes suggestions for treatment

And a mention about “die-off” and Herx reactions when de-toxing http://www.ahummingbirdsguide.com/treatingmeantioxidants.htm

In addition to possibly promoting a Herx reaction it could in itself cause an antioxidant effect:

“Ribose may support the body’s innate antioxidant mechanisms while promoting an antioxidant effect of its own.”

From 15 May – Almost Random Research

Uric acid:

pic by lunar caustic on flickr

Research has found that D-Ribose can contribute to the levels of uric acid in your body.

High levels of uric acid can cause gout, a form of inflammatory arthritis which usually effects the joints.  As the uric acid forms into crystals and settles around the body the immune system then attacks the crystals which causes inflammation.

Deposits of these crystals can also develop into kidney stones.

Read more about how uric acid can cause gout pain and kidney stones.

Research has shown that D-Ribose can contribute to uric acid levels and should therefore by avoided by those with gout or exisiting high levels of uric acid.

However, I am not clear whether the D-Ribose dosing for ME/CFS (typically 10mg 10g daily) can cause levels of uric acid to become dangerously high in individuals who do not already have gout or pre-exisiting high levels of uric acid.

Also high levels of uric acid in the blood does not always mean that a person will develop gout.

“Actually most people with hyperuricemia do not develop gout. Therefore it is not necessarily the high level of uric acid causing gout but perhaps a rapid change in its level.”

From Gout Prevention & Treatment on About Arthritis

Other factors  can contribute like dehydration, injury  fever, heavy eating, heavy drinking of alcohol , recent surgery, high blood pressure, abnormal kidney function and certain medications.

So it doesn’t neccessarily follow that D-Ribose can cause gout or kidney stones but caution should be exercised and it’s sensible that any new symptoms should be discussed with a doctor.

Warnings for use of D-Ribose:

pic by stewf on Flickr

Those with gout or high levels of uric acid should avoid using D-Ribose.

Diabetics should use D-Ribose only under a doctor’s supervision.

Hypoglycemics should exercise extreme caution in the use of D-Ribose.

Pregnant and nursing mothers should avoid using D-Ribose. 

“PRECAUTIONS
Pregnant women and nursing mothers should avoid supplemental D-ribose.

Supplemental D-ribose may cause hypoglycemia and elevation in uric acid levels. Those with gout should avoid supplemental D-ribose, and those with elevated uric acid levels and hypoglycemics should exercise extreme caution in its use. Those with diabetes should also exercise extreme caution in its use. And those diabetics who decide to try D-ribose must be under a physician’s supervision and have their blood glucose levels closely monitored and their antidiabetic medications appropriately adjusted, if necessary.

ADVERSE REACTIONS
Reported adverse reactions include hypoglycemia, hyperuricemia, hyperuricosuria, diarrhea, nausea and headache.”

From guidance on vitmaker D-Ribose product

Typically persons with ME/CFS are sensitive to drugs and stimulants like caffeine and alcohol.  It’s not impossible to imagine that they can also be sensitive to D-ribose.

It may be “just a simple five-carbon sugar” but it seems the possible side effects, particularly for persons with ME/CFS, can be more than reported by some suppliers.

Like any drug or suppliment caution should be used.

My experience:

I’ve been taking D-Ribose for a year.  I take two doses of 5mg 5g (one scoop) daily. I have mistakenly said I take 10mg 10g doses on my blog in the past.  It is in fact 5mg 5g doses.

pic by pckux on flickr

I find D-Ribose gives me a small but beneficial energy boost.

My condition has improved in the last year but only a few percentage points of the ability scale.  My concentration has improved a great deal and my cognitive disfunction is not as big a problem.  I recover from exertions faster than before I started D-Ribose.  An exertion that used to take me 4-5 days to recover from now takes more like 1 or 2 days. 

I am still ill with ME.  I am still pretty much housebound and unable to attend to routine personal care tasks on my own.  D-Ribose has not been a miracle suppliment for me.

I found taking D-Ribose in the evening (after 5pm) can cause me problem with getting to sleep.  I take 5mg in the morning and 5mg in the afternoon around 3pm.

I have had gastric problems persistently for the year I have been using D-Ribose including constipation, lots of gas, pain beneath my rib cage (possibly gas, possibly gallbladder), stomach and bowel cramping and spasms.  An IBS friendly diet and lately probiotics (Lactobacillus) seem to be helping with gastric disturbances but neither is a cure.  I did have similar bowel and stomach problems before I started D-Ribose although it feels different to before.

I have no way of knowing whether D-Ribose is responsible for any improvement or any side effect like gastric problems.

I cannot know whether these are a co-incidence, directly related to D-Ribose use, or indirectly from D-Ribose allowing an slight increase in activity promoting it’s own improvement and/or it triggering unwanted side effects.

What does alarm me slightly on a personal level about the uric acid link with D-Ribose is that I have gout and kidney stones in my immediate family.  That and there’s reasearch which suggests you can have an inherited problem with processing uric acid and thus be prone to complications.

D-Ribose is an expensive suppliment.  I think it’s worth experimenting by stopping taking it for a month or so to see what effect this has.

Summary:

I am not an expert or a doctor. This post collates information I have read on the internet.

D-Ribose hasn’t been scientifically proven to help persons with ME/CFS but research has shown persons with ME/CFS have disfunction in the cells which D-Ribose has been shown to aid. 

Dr Teitelbaum conducted a survey in 2006 which found it was effective for treatment of CFS and FM but it was  not placebo controlled and was conducted on a small group.

66% of the 41 participants found the supplement helpful and it produced improvement in all the areas tested: energy, sleep, mental clarity, pain intensity and well-being

D-Ribose can have side effects especillay in large doses (10mg or over).

You should avoid taking D-Ribose if:

• you are diabetic
• you have gout
• you have high levels of uric acid
• you are pregnant or breastfeeding
• you are hypoglycemic use only with extreme caution

Side effects can include:

• hypoglycemia or transient hypoglycemia
• diarrhea
• nausea
• headache
• high levels of uric acid in the blood (hyperuricemia) which could possibly leading to gout
• high levels of uric acid excreted in the urine (hyperuricosuria) which could possibly lead to kidney stone

Anectdotally reported side effects also include:

• constipation
• dizziness
• migraine
• abdominal pain
• difficulty getting to sleep
• increased pulse and blood pressure
• detoxing or antioxidant reaction
• herx reactions (fever, chills, headache, muscle pain, skin problems)

pic by -lif- on flickr

Persons with ME/CFS or FM may find D-Ribose to be beneficial.  Caution should be exercised and you should check the warnings.  If you take D-Ribose and experience any new symptoms you should consult with a doctor.

My previous posts on D-Ribose can be found here:

• D-Ribose – Week 1
• D-Ribose – Week 2
• D-Ribose – Week 3
• Around 1 month – Dangerous Days
• Suppliments I am currently taking

D-Ribose – Week 14

Wigging Out

I thought about buying a wig so when I do get to go out I can have half decent looking hair without having to make an effort. And then maybe Growler can wash it without me having to be there too.

Maybe Growler could shave my head as that’s an easy style to maintain and hats are easier to wash than people.

Can you tell my efforts to recruit a mobile hairdresser have been thwarted this week?