Archive for May, 2009

Inventing a Cure for ME

image by the rocketeer on flickr

image by the rocketeer on flickr

I’m considering inventing a cure for ME.  I can charge people a bundle for my scientifically proven treatment, do TV appearances and tell everyone how my cure can cure everything including ME.

What money I make I can donate to real scientific trials and biomedical research.

In the meantime I’ll be curing thousands of people. Even if it’s only for a month, a week or a day at a time that’s still a cure right?

It’s about time we had a cure for ME that’s really fun. 

So I’m thinking that bubblegum might cure ME.  Or perhaps rfairground rides.  Or maybe just that cake has magical healing properties.  I would suggest combining all of these in a strict treatment regime in order to be successful. 

I would tell you right now how to combine bubblegum, fairground rides and cake (BFC) but it’s better that you buy my book and DVD or subscribe to my weekly online course. This will vaguely outline the flimsy evidence but convince you that you’re a big fat loser if you don’t at least try my BFC.

miraclecureOf course you’ll also need to wear one of my special curing hats.  If you’re not willing to wear a comedy curing hat then that tells me you’re not really ready to accept wellness into your life. 

Please don’t think you can get better using your own hat – you need one of my special cure hats only available from a licensed practioner.  I have testimonials from lots of people who felt a bit tired and used the curing hats with amazing results.  Don’t ask me how it works, just take my word for it that it does.

I’m sure once the money comes rolling in I’ll feel like a new woman too.

**********

In other news I am taking Astragalus again.  The last time I had any sort of real improvement in day to day function was after I had been taking astragalus.  This is dangerous to admit because it indicates to the voodoo cure lot that I am indeed feeling a little bit desperate to get better.  Especially as I started taking astragalus because a woman I’ve never met told me on the phone it would cure me (a homeopath a family member had been using).  But I have a huge stash of it so I may as well take it and wait for a miracle.

I did read that astragalus is supposed to help support positive T cell production and has had some clinical success in assisting the effectiveness of HIV treatments.  But that’s just one study. 

Ah well.  Best pop my curing hat on and get cracking on marketing this cure I’m working on.

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Crocs Comfortable and Practical

putting your feet upI’ll admit Crocs are not the most attractive shoes but I do find them comfortable and practical.  Last summer I wore my grey Cayman Crocs most days.  When you’re housebound it’s easy and tempting to wear slipper all day long but it’s important to wear shoes from time to time to keep your feet well supported and healthy.

I find Crocs easy to wear.  You can slip them on as easy as slippers using the strap around your heel if you like for more security.  They are wide and give the feet plenty of room whilst offering toes some protection.  They are light weight and very stable (they don’t bend or twist side to side) which is great when mobility is a problem.  You can keep them clean by washing them under the tap and if you’re lucky enough to use them on the beach or the great outdoors they also float.

crocs baya chocolateSo when I had the chance of getting a pair of Crocs Baya from FitnessFootwear I was delighted.  I selected another neutral colour of chocolate, although the shoes are somewhat darker than the official Crocs photos show chocolate to be.

Crocs Baya are similar to the Cayman style but the front part of the shoe is a slightly different shape.  It also has the Crocs logo in relief along the side of the shoe.

crocs baya chocolate 2I found the Baya to be a little more narrow across the mid part of the foot and a snugger fit than the Cayman.  Also the ankle strap when placed on the top of the shoe tends to work it’s way up and doesn’t stay snuggly on the apex of the shoe.

But I do love my Crocs!  After months of wearing slippers the knobbly footbed really feels like it’s massaging the soles of me feet and I feel much better supported.  I can slip them on to flop about the house and kick them off when I want to put my feet up.  The airholes make them cooler than my trainers in hot weather but when it’s very hot my feet do tend to get a little warm.

crocs baya chocolate  4I have been known to wear my Crocs outside of the house although I know opinion is divided on the look of them.  They have good grip and give a wide base but perhaps are not the high end of fashion!  For me though they offer comfort and practicality on many levels.

Crocs Rx have been endorsed by podiatrics and are sanctioned for use in some US hospitals. They can offer great support and benefits to those with arthritis and various foot problems.  They’re only just becoming available to buy in the UK.

crocs baya chocolate  3Crocs aren’t to everyone’s taste I know.  But they do offer me a good alternative for practical, comfortable, easy to use footwear.

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?

What Awareness For ME Means To Me

Raising awareness of ME/CFS is something I try to do all year round. As a person with ME it’s not easy to be an activist; to lobby government, drive campaigns, raise funds or do anything very much in fact.  But I think a slow drip-drip effect can be more effective than you might think.

Thanks to the internet I am able to connect with all sorts of people – both those with ME, chronic health conditions, disabilities and those without. Through my art blog, Twitter, Facebook, Flickr and others I can show aspects of an ordinary life affected by ME.  There is more to me than my illness, which helps creates bonds and common interests, so that when ME is a factor it can be surprising, sometimes shocking, to others but it is another little nugget of awareness.

When I do come into contact with people face to face I talk about lots of things but I am also fairly open about the limits and challenges my illness imposes on my life and that of my family. 

So when the hairdresser, or the guy who came to clear the garden say “ME – that’s where you’re tired all the time?” and I tell them how it can affect sleep, stomach, memory/brain function, give you aches/pains and never give you a day off for years and years.  So maybe when ME is mentioned on the news, or down the pub, and someone says “that’s the thing where you stop in bed all day” they may be able to say “actually did you know …”.  Because they met a friendly, kind soul once who had ME and told them how it was more than just tiredness. That’s my hope.

When my local Twitter friends arrange a social meet up and I explain I’ll be there only if I am well enough they start to see how ME affects everything I do or want to do.  And when I manage to attend but am exhausted and ill the next day they get to hear about it first hand and maybe see that it’s a complex illness and see how it really impacts on a life.

ME and CFShey find out I’m honest, friendly, happy, enthusiastic and kind.  Not some mental case who has imagined an illness.  They get to see how much I want to live a full active life and how ME makes that so impossible.  And they find this out by getting to know me as a person, who happens to have ME.

I’ve heard so many times from family members that when they have told friends or acquaintances that I have ME so many reveal they know someone with ME too.  And in talking about it they spread a little awareness and don’t feel so alone.  Maybe that person will look at their ME acquintance in a different light after finding out more from my folks.  Maybe.

I choose a couple of ME organisations to support and to direct people towards.  For me it is ME Research UK and the ME Association both here in the UK.  I try to keep it simple.  When I can, I do more.  I started the ME Aware blog this year to help inspire other people like me who felt a bit lost with ME Awareness Day/Week/Month and felt helpless to know what one person can do to make a difference. 

Small things add up.  Single voices can form a noisy crowd.

ripples moonbird flickr

image by moonbird on flickr

OK so maybe my little day to day efforts are not full on driven attempts for getting more funding for biomedical research, or getting clinical guidelines changed to be effective and fair, or making the benefits system fairer for those with ME and fluctuating conditions, or getting the media to stop saying “Yuppie Flu”. 

But it is a drip drip drip of awareness.  And one drop makes a ripple that can reach far and wide.


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.