Archive for the 'ChronicallyHappy' Category

Push It for ME Research – 11 Sep 2011

my wheelchair at stowe poolI’m proud to announce my fundraising wheelchair push/walk is going ahead in just 5 weeks time.

Push It is a 10k fundraising wheelchair push/walk for ME Research on Sunday 11 Sep 2011 in Lichfield, Staffordshire, UK.

My condition means I can’t run a marathon or do a skydive to fundraise. So on Sunday 11th September 2011 a team of volunteers will push me in my wheelchair over a 1o km (6.2 miles)  route around Lichfield. Some will walk the full distance, others maybe just 1km (3/4 mile).

Sitting in the wheelchair while being pushed might not sound like hard work for me it’s actually going to be a huge effort on my part.  Due to ME/CFS I am mainly housebound and when I do go out it requires careful planning or my condition can be worsen very easily.

I’ll be documenting what happens and keeping you all informed through live updates via twitter and facebook

I hope you’ll join me on my adventure and help me raise money for ME/CFS research.

You can donate online or in the UK text “PUSH 50 £5” to 70070 (you can choose any amount up to £10 per text donation).

 

More information about how to join me and route/schedule

 

 

Push Me!

Since I first talked about my fundraising aspirations I’ve done some planning and scaled down the first event to be a bit more manageable.

stowe pool black and white D40

I’ve mapped out a ten mile route about my local city.  Two loops of 3.1 miles around the city, a short linking walk to next start point (0.2 miles) and then five circuits of the big pool/pond at 0.7 mile each. I’ll be asking volunteers to walk some or all of that distance with me and to push my chair for part of the route.

The larger loops are slightly more physically demanding as there are quite a lot of kerbs and chair tipping to be done but the final phase is flat and obstacle free.  That means hopefully that people of different abilities can take part.  Plus if the weather is good the pool/pond is a good place to gather to spectate and see the end of the 10 mile walk/push.

I’m aiming for a Sunday afternoon in July and have emailed my family today to see if I can enlist any willing volunteers to get me started.  Then I’ll get ME Research on board and look to publicise it all for International ME/CFS Awareness Day on 12th May giving me over 6 weeks to get it all sorted.

my wheelchair at stowe pool

At a leisurely paced walk with changeovers it’s going to take about 6 hours from start to finish which is an epic outing for me in my condition.  Plus I’ll be hoping to document the journey and do some live updates through the day.

But I have worked out that if I were to do a 10 mile walk by myself, doing as much as I am possibly capable of each week, it would take me around 80 weeks (yes eighty weeks) to finish.  I think that demonstrates the kind of debility I live with every day and will have to be included in my blurb to circulate.

I’ve also been working on a free weebly site for the event and have used google maps to plan the route and get the distances right.  It’s going to be a big challenge – organising it, publicising it, raising sponsorship and then actually doing it!  But it’s achievable.

UDPATE Change of date and distance

Tough Fornight

The brain fog is lifting slightly and my reasoning and thinking a little clearer to now understand why this last week, indeed this last fortnight have been so tough.

A fornight ago I had my outpouring of truths about my situation through tears and sniffles.  Turns out (as I should have known then) that the major trigger for this was hormones – specifically PMT.  Not that I regret the outpouring or what I learnt about how I was feeling.

Then the central heating boiler broke down so no heat and no hot water.  Although I had an electric heater the cold slowed me down, my brain was more foggy, everything seemed more effort. Plus there was the anxiety about getting it fixed with Growler’s anxiety about the lack of heat making me ill.

8 days ago I decided to take a quick, basic, but unassisted shower. I figured it was better to have wet hair in the morning and sit in the lounge with the fan heater, than to have Growler help me in the evening and sit in a cold(er) bedroom with wet hait.  Hmmm.

I had to wash my hair that day because the mobile hairdresser was due the next day.  So I wash my hair the day before and have a dry cut or get her to wet it down for me.  Turned out that unassisted shower however basic was bit more exahusting that I gave it credit for. I got through it ok but climbed back into bed for a rest.  Then realised I was whacked. Luckily Growler came home at lunch for something so helped me to decamp downstairs and get me some lunch.  Think it would have been a real battle for me on my own.

The next day (a week ago) both the hairdresser was due to visit and the engineer to fix the heat/hot water.  I was dressed and ready by lunch. Growler was at home to deal with the engineer and I sat waiting for the hairdresser from 1.30pm to 3.30pm. Neither of them showed up. Both had cocked up the appointment.  It took another 4 days to get hold of the hairdresser and the engineer was delayed by another 2-3 days.  So more days without heat and hot water.

The next day I started my period which always leaves me wiped since I’ve had M.E. and tends to make my IBS and constipation worse.  I was wiped.

The last 5-6 days I’ve not been out of my PJ’s which is something that hasn’t happened for more than a year.  It was a shock to the system to suddenly be crashed so badly.  The week has been a write off but at least the engineer did come and fix the heat/hot water.

Today I’m feeling a bit more with it. Even if these stupid PACE trial findings are a stressful way to start the weekend.

Not sure I’ll make it out of pj’s today but feel like I’m recovering and have figured out what it is I’m recovering from.  I think that shower exertion combined with the circumstances of hormones, lack of heating, stress and still recovering from January’s dip was much bigger than expected and it’s taken me a week to get over the crest of that hill.  It used to take me a week on average to recover from big exertions and unexpected things but since LDN I’ve bounced back within a day or two.  Hence why this has been a shock to the system.

I also discovered that we’d been using an old bottle of LDN which was at least a week past it’s best – quite possibly degraded and not working properly for me.  We started a brand new bottle 2 nights ago and hey presto I feel a bit more like I have LDN to support me once again.  It even tastes stronger/fresher/different.  This last week has really felt LDN-less.  Kind of makes me appreciate how much LDN does for me now whatever the reason for this crappy 10 days or so has been.

I’ve also felt that my sleep hasn’t been as good – possibly down to out of date LDN as well.  Which is why Sue’s advice about getting quality sleep with ME/CFS is so interesting. May consider some of these options once my brain can take the information in better.

Amazing how little things can become such a mountain and how little things can make such a vast difference.

Just a Little Bit: Year long fundraising for ME Reasearch

11/365 moneyLast year I took part in the Just Four Quid campaign to raise money for ME Research.  The idea was to use money saving tips to save cash for yourself and then give a little of what you saved to charity.  With a lot of support from friends and family I managed to raise £390 for ME Research UK

The campaign ran from May 2009 to May 2010.  But once it finished I decided to keep it up for another year and see if I could raise another £200 pretty much by myself from saving bits of money here and there.  I also would try to give around 10& of my earnings from my art sales.

http://www.justgiving.com/rachelcreative2010jfq

I’m very grateful that friends and family have also contributed this year and that has meant thanks to their generosity that I’ve just reached my target of £200 with 4 months still to go!

I’ll keep contributing to see just how far I can push past the target but it’s brilliant to know I’ve reached the goal!

Got some great books from the library. Been a long time. Love high tech self service!

I’ve done this mainly through:

  • using vouchers and coupon codes to save money, using special deals or opting for free postage from shops
  • making use of my local library instead of buying certain books and DVDs then giving on average £1 per book and 50p per DVD
  • making a contribution from what I’ve earnt on art sales
  • using my credit card for all my transactions then donating the cashback I earn

I’m glad my brother just gave a big donation to push me past the target as I’ve gone a bit book buying crazy this month so not many savings (although I’ve shopped around for bargains buying used books). In my defence I’ve been buying books my library doesn’t stock and so that I can post them on to my friend living in India whose feeling a bit starved of Western culture.

But it still remains that the £200 target for ME Research is met and there’s still scope for more contributions before May 11th 2011.

This Stuff Actually Works

I should really listen to my mum.  She suggested I try Aqueous Cream for my eczema. It’s really cheap, she said. You can use it as a soap, she said.  Use it as a soap? That’s ridiculous. Well, no, apprently not.

It cost me £1.49 for a big tub (which is probably going to last me a year at least) and it does indeed make for fab soap.  Washing my hands is suddenly not the excruiating experience it used to be – it’s actually rather pleasant.  And it’s helped my Pompholyx eczema loads.

Sorry mum – you did know best.

Whilst I was buying up supplies from the online pharmacist I decided to try this dry shampoo stuff too.  It gets lots of good reviews from people who use it because they’re on the run – not just people who are too knackered to wash their hair when they’re getting unexpected visitors or venturing out and have used all their energy already.

I had a squirt of Batist Dry Shampoo Tropical today – my hair wasn’t totally minging but looking a bit limp and on the turn.  Looking decidely deshevelled.  And it went “pooooof” – all lifted and not limp and not greasy.  Weird!  My hair looked a bit lighter – probably because I hadn’t brused it out properly but being blonde it doesn’t matter too much to me.  And I like the tropical smell personally so I even whiff a bit cleaner than I did when I got up. Yeah!

I’m not on commission – I’m only linking to where I bought stuff in case anyone wants to know more and that site has been good value.  I like to get my hayfever tablets from them as they are so cheap on the generic brand stuff.  And I’ve bought all sorts of stuff from them.

So I have two positives to share with you.  This is to make up for (and hide) my distinct tired and grumpy self which has a big fat dose of M.E. plus PMT complete with cravings that I can’t act on because my IBS is flaring and hayfever with scratching throat and sore eyes. Grumble.  But at least I have exotic hair and clean hands.

Up Up and Away

Up – My LDN Dose

I upped my LDN nightly dose last week from 2ml to 2.5ml. I tell you it’s such a teeny tiny amount of liquid but boy my body had something to say about it.  The side effects I had from the LDN only lasted a few days and I think were compounded by me starting to actively eat wheat again and being busy the previous week.

On the 2nd night  of my increase (Wednesday) I was woken around 3.30am with strong nausea, a real churning stomach.  I felt pretty delicate and a little sleep deprived the next day.  The nausea wore off by midday but once I did some small exertions back it came albeit mildly.  By late afternoon I was having acid indigestion (not something I normally have) and that night I was woken by strong nausea again around 3.30am.  After sitting up for a couple of hours and with the help of my faithful friend Resolve I got back to sleep at 5.30am and slept through until 10.30am.  I really needed the sleep!

During Thursday the nausea was hanging around – mild but a lot stronger than the previous 2 days.  Acid indigestion came again that afternoon and I was really uncomfortable by the time I went to bed.  I tried Eno but it didn’t help and then had to wait to take a Resolve which finally settled my stomach enough to get to sleep by 1.30am.

I slept in a little later on Friday and the nausea was pretty much gone and no acid indigestion.  There was a little after eating my evening meal and then when I had to move to go to bed but not too bad.  However my energy reserves that day were really low.  I really felt the fatigue hit with even small exertions aside from the essentials. 

By Sunday the nausea was totally gone, my sleep was back to being deep and sound as it has been prevuiosuly with LDN and energy reserves had picked up slightly.  Today (Monday) a week later and the energy reserves have improved a little and I feel I am on the up.

Up – Pottering About

Despite the 4-6 days of side effects from upping my LDN last week I did manage to water my plants and seedlings every day where needed.  I planted some red sunflower seeds too and ordered more pots & compost to pot up my peas I got from the garden centre.

I managed to do a bit of sitting in the garden when the weather was warm and was joined by my cat Flyman.  I even finished reading the first book in the True Blood series and I’m onto book 2.

Today I’ve put my nose to the grind stone to try and get work finished up on the web site illustrations for my current client.  I’ve done a finished drawing & am waiting to hear from the client to see if it needs any changes.

There’s a plumber coming this afternoon to look at out leaking toilet and radiator which need some urgent attention.

I have to get my pea seedlings into pots this week and hopefully get some flowers from the garden centre to attract hoverflies to combat the blackfly problem developing on my beans (and soon my peas I expect).  As a beginner I have to say this gardening stuff is complicated and can be expensive.  It would be much cheaper to buy the veg.  But it is amazing to see it growing and nuture it.  Sadly my outside tomato appears to have blight.  I’m not going to use antifungals – too toxic.  So if it is blight it’s a goner.  I expect my indoor tomato will fall foul of it too.

Meanwhile I need to decide whether to ask my sis-in-law-2b to water my plants once next week or ask my neighbour to do them a few times as well as feed the cat while we are …

Away – on holiday next week!

Me and Paul are taking a 10 day break up to North East England.  Ten days because we’ll take a day and overnight to get up to our self catering cottage in Northumberland – then stop off to see Ashy on the way back down country and then another overnight/day to come home.  It’s a bit too far for me to mnage the journey in one go.  But the pacing of the journey adds to the fun.  Like a mini road trip.

Once at out self catering cottage we’ll be 3 minutes from the beach by foot or wheelchair.  I did have lots of plans but I’ve scaled it back so now the pressure is off and we’ll be having a week by the coast to explore and laze.  To unplug from the internet! Well most of the time 😉

I do find myself worrying about the cat a little.  He can be so clingy and moans so much.  But our neighbours are fab and Mrs Next Door loves Flyman so I expect he’ll get some quality fusses and kisses.  Also they can hear when he is wailing in the garden and we’ll make sure they know it’s usually because he’s hungry (he’s always hungry!).

But yes a week by the seaside with the beautiful Northumberland coastline will be wonderful.  As will getting to hang out with Paul for a whole 10 days plus.  I miss him now he’s out working at an office full time.  And it will do him good to unwind a little.

Her’es hoping that 2.5ml of LDN will be giving me an extra boost by next week too 🙂

K-nackered

It might be a while since I last posted but it doesn’t feel like much has happened.  Or has it?

I stayed up all night to watch the UK election results come in – and I’m still tired.

20100506 4am election night

Made Paul a birthday card and celebrated with his family in South Wales for a long weekend.

paul birthday popup

Blogged for International ME/CFS Awareness and collated a list of awareness blog posts at http://meaware.wordpress.com

20100512 me outside

Did some artwork in Journal #4 of the Creative for a Second travelling  journal project.

Spin ME 02

Tried to start eating more healthily (mainly lots more fruit), despite having discovered a love of baking and having made a few batches of biscuits (one for us, one for neighbours and one for my brother/sis-in-law-to-be).  And despite deciding in the last week to reintroduce wheat and gluten to my diet with the intention of taking celiac blood test in 6-8 weeks (which is leaving me bloated, gassy, knackered and feeling rather rough).

20100522 peaches socks and fly

Started a new commissioned painting (a secret for now) and done more work on the web site illustrations I have yet to complete for another client.

secret commission double r

Tried to spend some time outdoors in the fresh air getting some proper daylight and if possible warming my bones.  I also got 2 tomato plants and a broad bean plant from my sis-in-law-to-be which I am trying to tend to without much experience in these things.

me and fly

Also I’ve started reading books again, mainly at bedtime. I’ve finished a John Grisham, read Sh!t My Dad Says (very short book) and am starting on the first on the True Blood books as I loved the telly series.

Plus 1 haircut (at home with mobile hairdresser), 1 viewing of a house, 4 cleaning sessions and 1 gardening session by sis-in-law-to-be, 3 visits from parents, 1 new bottle of LDN chased/received and several early nights. Inbetween that lots of surfing, sleeping and feeling a bit crappy.

Paul, along with my brother and sis-in-law-to-be, bravely took the clutter mountain to a car boot sale last weekend and fabulously they made us £150.  I didn’t go along as it would have been too much for me.  We have about half the clutter left but that can start to go to the charity shop(s) bit by bit.

I still feel confident that LDN is helping despite having felt consistently tired and generally crappy especially this last week.  I’m also feeling fairly certain that gluten and/or wheat makes me feel pretty yucky when I have it everyday. 

At the weekend sis-in-law-to-be is coming over to watch Eurovision and poke fun at it with us. 

I’m also hoping to get out to one of the good farm shops with Paul so I can buy some jelly to hopefully stop my yearning to make my own (too much effort for me right now).  I’m very keen to taste rosehips and honeysuckle, but any kind of jelly would be good especially fruits I can’t really eat due to my IBS.

I’d also like a trip to the garden centre to buy canes to support my broad bean (being optimistic it will grow enough to need support!).  I might even buy some pretty plants for the garden if I can make my mind up as I am a bit clueless in this regard but have a willingness for some colour and to help the bees.

Oh and of course I must get some rest. Hmmm. Yes, rest.


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.