Archive for March, 2011

Aspiration to Fundraise for ME Research

The last 2 years I’ve been donating what I can in bits and peices to ME Research UK.  I was inspired by the Just Four Quid campaign in 2009-2010.

What I’d like to do is more to fundraise for ME Research.  I think research is the key.  Research and trials can bring better clincial understanding, diagnostic tests, treatments and maybe even a cure.  These in turn can change the way patients are considered by doctors, employers, insurers, the media, drug companies.

But on my own I can’t contribute a lot of cash.  I also can’t go running marathons or doing epic challenges to inspire donations. So I need to think creatively.  And I have a hope that if I can think of creative ways to fundraise maybe it will inspire other people with limited means too.

My plan for the last 6 months or more has been to cook up some fundraising scheme/event that I can announce for International ME/CFS/FMS Day on May 12th 2011 which also sees the end of my current year of donating what I save in a Just Four Quid model.

One of the problems is that not only does ME and life whilst juggling symptoms/crashes/flares impact on what I can do for a fundraising event it also limits my ability to plan and organise that event.  Plus I have to find something really catchy and find ways to use social media to engage people because I can’t knock on doors or bounce around the streets. I’m even relectant to use traditional media because the energy to be presentable and cohorent for journalists is kind of tricky (although maybe I can utilise a husband who knows how to wrtie for papers).

So major sticking point at the moment is The Event.  I could choose to organise an event that other healthy people participate in but that would be a lot of organising and a big commitment. So for now I’m thinking some kind of novel sponsored event I can do myself.

I did consider doing a physical marathon by walking a little bit of it every day. then I did the math. Gulp.

A marathon is 42195 metres. Let’s suppose I manage to walk 50 metres at a time which is about my limit of walking unaided so probably pushing it a bit. That would require 844 days. I’m not going to be walking every day because sometimes I’ll be too ill and sometimes I’ll need my energy for other things so say I do an average of 4 days a week. That would mean it would take me 210 weeks, or 4 years to walk a marathon!  I’m not sure anyone would stick around to be engaged in my fundraising event for 4 whole years.  And I have to tell you this calcualtion really knocks the wind out of me because I realise just how far away from a healthy fit person I am. Yikes!

So no marathon on my own two feet. I do quite like the idea of doing a marathon with other people helping me. To be pushed in my wheelchair for 26.2 miles by a team of volunteers perhaps over the course of a month during the summer.  It would still be a demanding event for me because being up, ready and going out is a big deal energy wise plus being along for the ride (with a variety of pushing approaches and speed!) and also engaging folks to fundraise also has to be factored in. But much more achievable than doing it myself!

By recruiting volunteers to push me I’d also be attracting more interest as hopefully each of those people would tell a few folks about their involvement.  Plus they could choose where they want to do their mile(s) – be it around my local streets, in a park, cross country (ouch), in a shopping centre, a circuit of a gallery … it could be anywhere!  It could be midday, at sunset or in the dark.  And I could take photos, maybe video and share the journey online.  Share it as an adventure.

OK so it does kind of sound like I have a plan!  But it needs some refining and I need to think it through.  I’d have to set a limit to how many miles I could do in one day and how often I could go out – but keep the schedule tidy enough to make it appealing to potential donors and easy enough for volunteers to get involved.  I’d also need to have some guidance to give volunteers on pushing the wheelchair.  I know my dad’s style of pushing is very different to my husband’s for instance.  My husband pushes me very carefully – my dad goes for speed.  Both are good in their own ways though speed is a bit more tiring as I have to fight not to get catapulted out the chair!

If I cast my mind around I can think of 3 or 4 people I’m sure would volunteer and I suspect others I know through Twitter might be happy to get involved if I make it easy and fun.  It might be that if I can iron out the details and announce it other people with ME who want to fundraise for ME Research UK might also do their own pushed marathons.

It’s not quite as quirky as I’d first imagined I’d aim for.  But then I don’t have to limit my fundraising to one event and I hope to do more over the year.  But it is potentially something that could capture interest if I market it well enough. And it does seem I have a lot more in my brain ready to go than I realised when i started writing this blog post! I need to start proper planning. I have less than a month to firm up my plan and start recruiting/marketing if I want to announce it for ME Awareness Day. Gulp.


UPDATE: Having one some thinking and planning it really is a massive commitment. It would mean an outing just about every other day for a month. Gulp. Still doable but would surely take a toll. So I’m also considering the idea of doing a big push (literally ha ha) and getting people to relay push me a marathon distance over a weekend. It takes one person about 8 hours to walk a marathon with comfort breaks. Four hours a day over two days sounds achievable albeitwith  a calculated crash afterwards andweeks to recover possibly. Need to think some more to decide which is the best approach.


Warm Front Grant Rant

I re-activated my Warm Front grant in Autumn 2010. It had been on hold while we waited for our landlord to invest in new windows Once he’d started compensating us for heat loss due to drafty windows and it was also apparent that we were staying put for a while ratther than moving, I phoned and re-activated my application to get free insulation work done on the house.

After I was re-assessed (or rather the house was) they can to the same conclusions as last time – loft insulation top up, cavity wall insulation, new jacket for water tank – but with the addition of cutting a new loft hatch in part of the house where to assessor thought wasn’t accesible from the main loft space.  Although he didn’t actually go into the loft as his ladders weren’t long enough (not very professional although he was very friendly and informative about the process).

I’ve been waiting around 4 months (maybe longer I forget the dates) to get an installer assigned to do the work. Today I got a letter from my newly assigned installer telling me they’ll come “to assess and where possible complete this installation” on 30th March 2011.  Except the letter also states that work must be completed by 27th March for me to qualify for the work. Huh? **update below

I phoned Warm Front, who are less friendly than they used to, to ask what that 27th March date meant.  Was it a deadline for the installer or some kind of deadline (previously unknown) to my grant eligibility?  I was told that all work for current outstanding applications must be completed by end of March or else the money would be gone.  If I couldn’t get the work completed by end of March I would have to re-apply when (if?) they re-open for applications sometime (unconfirmed) after April 2011. There’s some talk that the criteria will change next time so I don’t even know if I would qualify next time around.

It’s rather unsatisfactory to have enquired about progress of the work in January to be told it was awaiting assignment and there was a backlog then to discover a time limit for the work which they never informed me of.  Even their web site is woolly about it. It says applications are not being accepted and that,

“All existing applications to Warm Front will be honoured and, as far as possible, works will be completed by the end of March 2011.”

But it doesn’t state that if the work isn’t completed that’s the end of your grant and window of opportunity.  Being up front would have helped me not have to ring them up and get the advisor who must be sick of telling people the same thing and fielding complaints about not having work allocated and running out of time.

Something that really irritated me about the process though is my letter tells me to “please ensure that loft spaces are clear of personal belongings, debris and any boarding prior to our arrival”.  I’m presuming like so many things now if it isn’t clear they won’t install in that part of the loft.  But I’m getting this help because I qualify on the basis that I can’t take care of myself – I can’t bathe myself or go out of the house on my own let alone go up in the loft or shunt things around!

These Government assistance schemes don’t really go as far as they need to or join up the thinking. I got a letter last week about getting subsidised assistance to switch my tv to digital and am tempted to get a freesat box as they will install the dish and box for a very reasonable amount.  But what the scheme doesn’t do is tell you if you need, or help you to get if needed, planning permission for the dish.  They think if I struggle to negotiate switching my tv to digital that I’ll be perfectly fine applying for planning permission?  Hmmm.

As for the insulation work I’m going to have to ask Growler to ring them and see a) if the work is carried out on 30th March when the letter says it must be done by 27th if we’ll get a bill for the work and b) if they could come earlier because if they assess and can’t do it on the 30th March it won’t get done at all.  My ME/CFS brain can’t cope with that conversation plus he’ll know days he might be able to make himself available as they want to arrive between 8-9am and take 4 hours to do the work and they need access inside and out.   So a bit much for me on my own.

I imagine there’s going to be a lot of people who have been waiting a long time for they’re heating and insulation work (heating particularly was being quoted a long waiting list) and who are going to be furious to discover their grant has been cancelled because the scheme couldn’t get the work scheduled in time.  And Warm Front must be pretty unhappy that their budget got squeezed so much they had to stop accepting applications and ended up in this situation stuck between installers who want to get cash and clients who want to get warm homes.

I just hope my home gets to have the insulation work done in time.


**UPDATE: So hubbie spoke to the installer and the 27th March was a typo on the letter. Phew! Also she says there is a bit of wiggle room to get work done. Double phew!

Prescription Prepayment Certificate PPC

It’s that time to renew my yearly Prescription Prepayment Certificate. Always seems a lot of money (£104 this year) so I’ve done a quick calculation based just on amitriptyline, sumatriptan and celevac which I get on prescription and it saves me £60 a year.

Not to mention any other things that might pop up from time to time. Plus it’s ever so easy as Growler can just produce the card each time without needing to have the cash on hand.

I might even save more than that because I forget how many things count as one item for a standard prescription charge (£7.20) and my GP is quite generous with how many items I get for each prescription.

You can laso pay by direct debit over 10 months without extra charge and then it’s automatically renewed each year.  Or just take it out for 3 months but this works out a bit more expensive – good for short term use though where an accute illness or injury needs a lot of prescriptions.

I would take a photo to illustrate my blog post but it’s kept in my husband’s wallet and I never see it as I don’t need to.  He’s the one always fetching prescriptions.

Incidentally my pharmacy (a Boots affiliate) keep asking my husband to bring me in for a health/medicines check. They say they’ve been asked by the government to do reviews for everyone having regular prescriptions to make sure everything is ok. He’s explained I am pretty much housebound and if he does manage to get me out the house he doesn’t want to spend that valuable time talking to the pharmacy about my medication when I have a regular review with my GP who is happy with what I’m taking.  The sensible pharmacist said not to worry about it but the newer more junior staff keep on asking.  Makes us suspect that the pharmacies are getting money from the government to do it. Very annoying.

Starting New IBS Probiotic – Saccharomyces Boulardii

I’ve been taking a probiotic with every meal for my IBS for 2 years (thank goodness for so I can keep track of these things more easily now!). I’ve been using Higher Nature’s Probio Daily which is lactobacillus sporogenes.

Lactobacillus sporogenes, acts as a ‘transient’ bacterium, helping to maintain intestinal and immune system health, a balance of good bacteria over bad, and regular bowel movement… One tablet contains 150 million bacteria.

To be honest I’m not really sure if it’s helped with IBS or not. It’s not as though if I don’t take it or I miss a day I notice any dramatic difference. But I figured it didn’t do any harm to take it either.

A friend reminded me about Florastor which she takes and which is a different kind of probiotic. It’s saccharomyces boulardii which is supposed to be good for IBS and IBD like Ulcerative Colitis and Crohn’s Disease.

Florastor has limited availability in the UK but it’s very expensive so I started searching for saccharomyces boulardii and came across Optibac for Bowel Calm. It used to be called DiarSafe thank goodness Optibac sounds so much better!

It’s still expensive but I got some on special offer to try and they arrived today so my saccharomyces boulardii experiment begins this evening.  I can’t say saccharomyces boulardii but notice how much I like copying and pasting it!

OptiBac Probiotics For bowel calm contains pure Saccharomyces boulardii, a natural and safe probiotic yeast with vast scientific research and documentation on its benefits in supporting bowel health, comfort and function.

S. boulardii has been internationally acclaimed as the number one probiotic for diarrhoea – to reduce discomfort and urgency and to restore control and regular bowel movements. For bowel calm Saccharomyces boulardii is a natural probiotic food supplement and not a medicine. It is a completely natural probiotic offering support for fast acting bowel calm, comfort and control when you need it most.

How does For bowel calm work?

Saccharomyces boulardii – a unique probiotic yeast which is sold widely in the US, Scandinavia, Germany & France. S. boulardii has undergone extensive clinical research demonstrating its ability to flush out pathogenic bacteria such as E. coli and Salmonella, in order to work against diarrhoea.

For IBS it’s 1 tablet a day which does it make somewhat more cost effective (it’s about £6 for 16 tablets and £25 for a box of 80 tablets) and it’s not the most expensive suppliment I’ve tried. Optibac is also much more widely available in the UK including direct from the company but shopping around you may get a good deal.

But if it does prove effective (fingers crossed) I’ll look to buy another brand of saccharomyces boulardii through I think – there’s quite a few available.

So fingers crossed and I’ll see what happens with the old guts overt the coming weeks!



Push It 11 Sep 2011

for ME Research

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