Archive for May, 2008

Is This Progress?

I just saw an empty crisp packet (that’s a wrapper for potato chips for my US friends) in the front garden

I didn’t think my usual thought “(Sigh) I wish I could keep on top of things like that”.

I thought “Ooooh – I could just eat a bag of crisps”.

Is that progress?  I don’t think so.

Carer Goes Free?

In England many events and venues have a policy that disabled people (or at least those using a wheelchair) can have a carer go free.  So you pay just for the ticket for the wheelchair user and the person who is there to assist them has a free ticket.

This is a great way of encouraging wheelchair users to attend events and increases accessibility to culture.  Certainly I wouldn’t be able to attend such events without someone to assist me.

The policy of reduced admission, or carer goes free varies from place to place.

At the Birmingham Hippodrome (Christmas 2007) we were offered wheelchair user at half price ticket and carer for free.  The wheelchair space in the theatre had a great view of the stage and ample room to get into position.  Also with the raked seating a special weighted area where it stopped rogue wheelchair rolling to the front!  The staff were brilliant.  It was very easy to access the building and everyone was friendly, professional and made eye contact with both me and my husband pushing me.  We had our own fire safety talk about procedures for us in case of fire from a member of staff. And the toilets were great – the first disabled toilets marked with a wheelchair symbol and a person with a stick!

For the Lichfield Festival we were offered carer for free and a pass to allow a car to drop off disabled visitors (as parking is strictly controlled near the venue).

At National Trust venues we have been offered carer for free (and I think the admission for me was reduced but I can’t remember).  Staff are generally friendly and keen to offer advice about areas suitable (and not suitable) for wheelchairs.  At Saltram (2007) they were very helpful and professional.  At Shugborough they were friendly but a bit too OTT in the house and we had a lecture about where we couldn’t go in case we damaged anything with the chair.  The lady also insisted on speaking to me and me alone even though I was signalling I couldn’t comprehend her instructions.  But a lot of them are volunteers so I guess that’s why it varies.

I’ve just booked tickets with the Civic Hall In Wolverhampton who make no concession for wheelchair users or their carers.  Full price for everyone.  They do have allocated seating although their access directions on their web site sounds like we have to make a special request on the night:

“Access to the Civic Hall is gained through our front doors, which are up a couple of steps, however, if alternative access is needed, there is door with ramped access to the far left of the front doors, where staff will be happy to help you.”

When we went to a gig at The Birmingham Academy last year I wasn’t using a wheelchair when we booked the tickets.  By the time the gig was getting cose I was using a chair and I did request a wheelchair space thougg. The email exchange to arrange it was really good.  We went to the front of the line and were let in first.  The staff were friendly and made eye contact with me.  However, the area for wheelchair users is on the balcony and you are basically fenced in with wheelchairs and chairs making a makeshift seated area.  It makes getting in and out of the area really difficult because there’s no formality to how the seats are arranged.  Also the height of the railings and handrail mean when you’re sitting down you can’t see the stage because the thick handrail blocks your view.  Only a few people had pre-booked disabled places but by the time the gig started there was a lot of us – 3 or 4 deep in places.  There’s no way everyone could see and being fenced in together it felt kind of uncomfortable.

Then there was The Academy toilet situation!  The ladies toilet was close by on the same level but not accessible.  The gents toilet was down a flight of stairs.  The disabled toilet required asking staff for directions and then having to negotiate a back office just wide enough for a wheelchair with two sets of fire doors.  The toilet was radar locked which is fine but we had to hunt for a member of staff to then radio someone else to get a key (I now have my own!).  It was, to be honest, a bit of a nightmare.

I know most of this won’t be of much relevance but maybe someone might search about wheelchair access to these venues and this might give them an insight!

Meanwhile I shall continue to sulk (just a little) about having to pay full whack for my Dara O’Briain tickets in October at the Civic Hall – even though usually I feel a bit embarrassed when I get a discount just for not being able to walk through their theatre.

Miscommunication: Put It Down To Brain Fog

Settling down in bed …

Rachel: She said (such and such) but I think she meant to say (this and that)

Growler: Oh I see.

Rachel: Yer.  Put it down to brain frogs

Growler: [Chuckle] Brain frogs?

Rachel: Bain f-f-fog.  I mean brain frog – FOG!

The Vitamins and Supplements Quandry

I’ve just restocked on most of my regular vitamins and suppliments.  A change to my regular immune focused multi-vitamin (a new formula) has meant I’ve needed to double check I’m taking safe doses of everything.

Isn’t the internet (and world) full of contrasting information?  Or should that be opinion?

I am either:

  • optimising my nutrition and immune system
  • not taking high enough doses of stuff to have an impact
  • taking too high or too regular a dose of stuff and so setting myself up for toxic levels of substances, comprimising my immune system, and possibly other health complications
  • or I am making very expensive wee because we can’t absorb tablet supplements anyway

Sigh.  Even my books on CFS/ME by doctors disagree on which to take and even if to bother at all.

So I am shuffling striding boldly forwards, taking safe doses of various supplements because they haven’t given me any ill effects in the last 18 months and because I’ve just bought another 3 months supply! 

Oh and because when I stopped taking them last year I caught my first ME cold which developed into a chest infection which took me 3-4 months to get over.

This post is about me the suppliments I which  choose to take.  It’s not plucked out of thin air – I have done research and there are reasons why I do and don’t take certain things (right now).  I’m not an expert.  I’m just sharing my list for interest only.  Ok then.

Here’s my current list of pills and potions I take daily:

  • Immune supporting Multi-vitamin (including selenium, vitamin E, K, B1, B2, B6, folic acid, cystine, chromium and bioflavanoids amongst others) – Vitabiotics Immunance from ChemistDirect
  • L-Carnitine – 500mg (+30mg from muti-vit) – Lifeplan L-Carnitine 500mg from Lifeplan
  • Vitamin D (D3 cholecaliferol) – 500iu (+400iu from multi-vit) – Higher Nature Vitamin D 500 iu from GoodnessDirect
  • B12 – 1000ug (+14ug from multi-vit) – Lifeplan High Strength B12 1000ug from Lifeplan or GoodnessDirect
  • Magnesium with calcium – 66mg (+50mg from multi-vit) – I can take more if nauseous. Lifeplan Magnesium with calcium 500mg from Lifeplan

Plus:

  • Zinc – I’m now getting 15mg from my multi-vit so will only suppliment additional 15mg if I am fighting a virus – Lifeplan Zinc Amino Acid Chelate 15mg  from Lifeplan
  • Vitamin C – 1000mg (+ 150mg from multi-vit) – Natures Aid Low Acid Vitamin C 1000mg from SimplyNatural. I may start taking this every few days as some suggest it can have a bad effect having it daily.  This is the one brand that doesn’t irritate my stomach when taken at high doses.

Plus currently:

  • D-Ribose – 10g twice daily – ATP Pure D-Ribose 250g from MuscleForm
  • Co-Enzeyme Q10 – 200mg daily – Natures Aid Q10 100mg from QuickVit
  • Probiotic (lactobacillus sporogenes) – 3 times daily – Higher Nature Lactogest 90 tablets from GoodnessDirect
  • AllicinMax – 1 a day – Allicin International (not, I repeat not Health Perception) from QuickVit

I have also tried in the past:

  • N-Acetyl Cysteine 600mg daily
  • Astragalus (I will start taking this again soon)
  • Omega 3, 6 and 9 (fish and flax seed derived)
  • High doses of AllicinMax/Allimax

I shop around for deals on the vitamins/brands I use and have used UK based suppliers including

My preferred brands are:

  • Lifeplan
  • Nature’s Aid
  • Higher Nature

I find generic supermarket and Holland & Barratt can make me feel bloated, sluggish or irritate my stomach.

I eat daily fresh fruit, vegetables and protein.  Drink water, peppermint tea, fennel tea and a small glass of grape juice.  Take very little and only occasional dairy, wheat, sugar, deep fried anything. No alcohol, caffeine, carbonated drinks, red or dark meat,  eggs.  Avoiding MSG and artificial sweeteners wherever possible.

Here I am being as careful as possible, being as healthy as possible and still stuck at being at my lowest health ebb of my life. 

It used to frustrate me when I read about what CFS people took to help when they were clearly still very ill.  But I know without being careful and without taking control of my nutrition things would be much worse.  There’s always going to be someone who tells me I should be taking x suppliment and someone else telling me I shouldn’t.  I think this is more of an art than a science.

I do know that whenver I write “nutrition” my brain always thinks “nuture” instead.

Things My Cat Likes To Eat

Well this post doesn’t have much to do with my illness but my life isn’t just about my illness so I thought I’d try talking about something different. Also enjoying a simpler life enhances my joy of simple things.

Like – my cat, Flyman (his previous owner worked in the theatre – what is a flyman? ).

20080224_fly_recouperates

Flyman is very food focused.  He’s pretty well behaved but from time to time he sticks his head in a finished bowl or plate oF something that’s been left within his reach. 

So, by accident, over the years I’ve discovered he’s very partial to (as in purrs like crazy and acts demented for):

  • Heinz cream of tomato soup (other brands he’s not so keen on)
  • Curry (the sauce mainly)
  • Strawberry yogurt
  • Butter
  • Chips
  • Dried figs

The dried figs is a recent and particularly disturbing discovery.  My dad says Flyman also likes to eat cheese and crisps when he’s at their house.

I think he is all time favourite is the tomato soup.  He goes crazy if we have it. 

When he had to had some of his teeth removed a couple of years ago (from old age and not from eating rubbish I may add!) the vet told us not to feed him solid food for 24 hours.  Give him some soup instead the vet said – a meat broth with the chunks sieved out

Would he eat broth?  No.  Did he end up wth his own portion of tomato soup?  Of course he did.

Oh You’ll Never Cope With Real Pain

I’m not a shining example of an ill human being.  I wish I were one of these people about whom they say “No matter how bad she felt she never complained“.  Clearly – that is not me.

How do those people do it?

I’m in the midst of a horrible gastric thing again.  Awoken early in the morning by a worsening in my abdominal cramps caused (probably) by constipation, trapped wind and spasming in my bowel.  Just for good measure I’m also fighting off a migraine – probably due to the twisty contorted faces I’ve been pulling all night trying to get comfortable and sleep.  Oh and the icing on the cake – a big dollop of nausea too.  Not to mention all the squirming and writhing, rocking and walking, fidgeting and belly rubbing is becoming pretty exhausting now.

So I whimper quietly to myself trying not to wake Growler.  I can’t make it downstairs and I know I’m going to want to lie down just as soon as some of this eases (please let this ease).  But once he’s awake I let go and squeak, growl, grizzle, moan and swear.

I am miserable with the pain and the discomfort.  I want it to stop – please stop.  I try to console myself with all the people in the world (all the people I know) going through worse things than me but I’m still writhing and twisting and sqeaking.

“No matter how bad she felt she always complained”.

It’s times like these I’m reminded of when I was a young girl and had some knee scraping/twisted ankle/earache or another. 

I was not a gracious patient even then it seems as I remember clearly my mom, exasperated, saying “Oh god help you if you ever experience something REALLY painful.” 

It’s kind of haunted me ever since.  If this wasn’t real pain then what was I in for?  Mum’s are always right (ha) so if I do get real pain I’ll never cope with it.  I was hardly ever ill as a child and indeed into my late twenties.  I’ve never (touch wood) broken a bone and never set foot in a hospital until my referral for my back problem in my late twenties.

I stumbled through life knowing that if I ever experienced real pain I was done for.  I thought it was all the more disappointing for my mum as she has an amazing tolerance for pain and keeping going.  When the doctor at the hospital diagnosed her (quite by chance) with an underactive thyroid he told her she should have been dead.  She fought for so long without her GP recognising the condition and pushed past the pain and the fatigue.  Why couldn’t I be more like her.

In 2001 I started getting pain in my leg which I just couldn’t shake.  It took me months to go to the doctor who instantly referred me to the hospital.  When I finally had my back x-rayed my lower discs were (are) compacted and the specialist said these magic words “there’s not many people your age in as much pain as you are“.

I’d been quietly muttering about my “leg pain” for months and months to parental reactions of rolled eyes.  I got the distinct impression they thought I was making it up as an excuse to be lazy.  A year or two later, once I had learnt techniques to minimise triggering sciatic and back pain, I realised just how much pain I had been in and how well I had tolerated it.  The only sick days I took due to my back was a few days when I was so spaced out on painkillers it wasn’t practical.

Now I know this stabbing, grinding cramping isn’t at the top of my pain scale.   In fact it sounds really wussy to complain about it all.  But it’s unrelenting.  I’m not used to constant pain in that part of my body and I’m having trouble coping with it.  I’m having trouble coing with knowing I just need to eat one thing that’s not quite right (probably without realising it won’t be quite right) and I get all of this back again.  I get all this pain and discomfort sweeping down on me and it will take a day or two or three or more to get any relief.

So, yes, I am moaning about the pain.  No, I’m not one of those amazing people who “never complains not matter how bad she feels”.  But I reckon if I am moaning – then it’s probably pretty bad.

One Day I Will …

I’m having an odd week.  I think I am mentally, emotionally and physically tired.  I had another run of terrible gastric pain and my trouble sleeping has continued.  I think it’s taking it’s toll.

Through ME/CFS Awareness Day I read so many stories of people with ME for years and year.  9 years, 10 years, 15 years, 20 years, 35 years …

I know I believe, from what I have read (and read extensively) that ME is not cured.  It can go into remission but you’re never completely free of it.  I don’t want to believe this – I want to believe I have something that can be fixed.  But no, 95% of what I hear and read and feel is ME is an illness that never totally leaves you.

Somehow I manage to pin that belief on all sufferers except for me.  Until this week – when it finally rang in my head that I may never never be rid of this illness.  I might achieve remission and maintain hope.  Hope of remission, hope of treatment, hope of a cure.

So I have this thought in my head and it’s creeping into my heart that I’m always going to battle with this.  I’m never going to have a clean bill of health again. 

It’s infinitely easier and more possible that I will get worse than better simply because I only need a small window of stubborness and/or stupidity to worsen my health.  And I want to scream and wail and let go.

I am not ready for this idea.  I am not able to think it can be true.

I’ve always thought “One day I will go for long walks again”, “One day I will cycle all day”, “One day I will spring about with energy and ethusiasm”, “One day I will be able to do all those jobs around the house for my mom”, “One day I will have that fitness freak phase I always promised myself”.

This does not sit well withe the idea that I will always have ME. 

I can only hope that remission will allow me these freedoms. 

But for now I can only try not to think about any of it too much.


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Push It 11 Sep 2011

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