Archive for the 'ChronicFatigue' Category

Losing Weight with ME progress report – 19 weeks

Here’s my progress report for my plan to lose weight with ME. I’ve been healthy eating and doing what little exercise I can with ME for 19 weeks now and I’m very happy to report I’ve lost 19lbs so far. On target with an average 1lb a week loss!  I’ve lost over 4.5″ off my waist, hips and bust. It’s not always been easy but I am very very determined this time around and using the MyFitnessPal web site has really helped.  Not only has it helped me track my food and exercise but I’ve learnt a lot about my food habits and changed them for myself instead of following a programme of rules set by someone else.

It’s a balancing act with my gut and IBS issues to also eat a calorie deficit in a healthy way.  A lot of foods usually considered to be the main core of healthy eating aggrevate my gut (wholemeal, brown rice/pasta, salad greens … roughage generally!) so I’ve had to find things that work for me and are as healthy as can be.

I’m eating a calorie deficit each week and doing a little exercise too.  Generally anything that gets my heart pumping leaves me crumpled within minutes so it’s all quite gentle stuff.

My main exercise has been pilates following Lynne Robinson’s Body Control DVD (with extra exercises from Weekly Workout DVD) Usually I skip the standing exercises and stick to floor work which means most of it is lying down with a few exercises on all fours.  I can now do about an hour including warm up/wind down and am definately feeling the benefits of stretching muscles.  It’s helped with pain and posture leaving me *almost* energised afterwards. When I haven’t done it in a week or so (I had norovirus which set me back) I can feel it in my hamstrings when I come to stretch them and my back gives me more problems.

I’ve also had the opportunity to try some gentle swimming each week. My sister-in-law has been taking my 1 year old niece for half hour swimming lessons each week so she’s taking me along. I get to use the big pool while they have the lesson. I do a gentle swishing swim on my back as my heart rate monitor shows that even side stroke is too energetic for me.  The first week I wore myself out but since I’ve adopted half floating/half swishing on my back it’s been less exhausting and more therapeutic.  What’s also good is my local council gave me a special card membership for free being disabled (usually £25) and also give me half price admission. That makes a short session with minimal swimming much more viable.

I’m also still using my  rebounder although not as much as I should be (rebounder for ME/CFS ). But I’m trying to do at least a couple of minute each day as it can’t hurt my efforts.

The other 2 DVD’s are still enjoyable though I’ve not done them so much the last month but focused more on pilates as my energy levels haven’t always been so good.  I always seem to be recovering from something or resting in preparation for something at the moment!

I’m starting to feel muscle definition in my arms and thighs. Plus I know I’ve improved the strength in my core thanks to Pilates as I can now sit up from the rest/child’s pose which I couldn’t when I started- I also noticed when I had a bath that going from lying to sitting is easier and as there’s a bit less of me I’m easier to wash.  I’m hoping as I’ve already lost 19lbs I’ll be a little easier for family to push me in my wheelchair too.

I’m 38% towards my target weight and dress size. It’s going to take me a year to get there but it’s so worth it. I feel good about myself even if the ME is kicking my butt a bit at the moment! And I’ve even inspired my husband to sign up to MFP site and see how to maximise his own healthy eating and fitness regime. He has a little less than me to lose to his target and I think he may lose it faster as he can do some proper cardio. He lost 2lbs in his first week  of sort of feeling his way and I’m so very proud of him.

Created by MyFitnessPal – Free Calorie Counter

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

 

 

High Heart Rate (POTS)

55/365 heart rate monitor my normalThe idea of Pacing By Numbers is an interesting concept but a little controversial as some health professionals think it’s a bit obsessive. To those trying it they find it a way to quantify when and how much effort to use and it gives a clear signal when to stop.

Basically you wear one of those heart rate monitors used by people at the gym and try to keep your heart rate below your AT (anaerobic threshold) which is when you start to use energy you don’t have. For me using the calculation that’s 106.

Having bought my HR monitor I started to wear it to observe what my heart was doing when I was resting, sitting using the laptop, getting up to the loo, preparing lunch or a cup of tea, going up stairs and so on.  I discovered my average sitting around doing things like watching telly was between 97 on a good day and 108 on a bad day.  When I got up to do things, gentle things like make a cup of tea, it was up to 130-140. That’s higher than most people get when they work out. My maximum heart rate is supposed to be 160.

When I went on high doses of tramadol and high strength co-codamol it was even higher and at one point walking from the car up a few steps to my brother’s front door my heart rate hit 162 at which point I stopped looking at the monitor in an attempt to relax as much as possible!

Having done some research about POTS (Postural Orthostatic Tachycardia Syndrome) especially in M.E. I made an appointment to see my Lovely GP to discuss whether it could amitriptyline causing it or whether we might be looking at a POTS diagnosis.

I saw my Lovely GP today and she says it’s very very unlikely the highHR is due to amitriptyline as the dose is so small.

She hadn’t heard of POTS but I had printed 3 articles, a testing sheet (with CD copy) and a list of specialists for her. She was very interested to learn a little about POTS and keen to read up.

Happy World Heart Day!

By Robinn on Flickr

I’m going back on the 17th May at the end of her surgery to do proper POTS testing so we have lots of time.

She took my pulse sitting which I guessed right was 104 (she was impressed I could guess my heart rate but I didn’t tell her I’ve been wearing that heart monitor a lot!). Then I stood for like 30 seconds and she took it and it was 116. Not a POTS test but enough to both satisfy and equally fuel her interest. She said 97-104 as my average sitting rate isn’t totally surprising as I’m technically unfit from the sedentary ME thing but when I told her if I lie down and do deep relaxtion it doesn’t change she was a bit surprised and intrigued. I have an effective deep relaxation track which almost sends me to sleep and it lasts 30 minutes but even with that lying down my heart rate doesn’t seem to dip below the low 90’s.

I’m booked in for an ECG tomorrow morning with the practice sister to rule out heart problems.

My GP says since the NHS funding cuts and being in the new world the system is all very confusing again and it seems very difficult to do the “Book and Choose” of before where you could pick any specialist you wanted. So seeing an out of area specialist may now require an application for special funding or perhaps referral to local cardiologist then on to POTS specialist. Seeing as how most docs don’t know about POTS that seems like a long shot to me.

Atenelol

By deartistzwei on Flickr

But I did tell her that I have friends online with POTS who are being treated by their GP using beta-blockers (Propanolol being the one of choice for POTS and ME) so we could maybe do without a specilaist referral.

Am stupidly excited at the prospect of trying Propanolol as I think my high HR is responsible for a lot of my “stamina” issues – why I can only stand for a few minutes or walk very short distances. I’m excited about Propanolol because I know a lot of people in the ME/CFS pacing with HR monitor Facebook group have had good success with it but not with other beta blockers.

She does have a good article on POTS (from John Hopkins CFS clinic) which lists drug therapy options (including some notes from me! Like how stimulants are not advised by ME experts and the beta-blocker recommended isn’t tolerated well by ME people) so she can do her homework on other options she might think are more appropriate or not.

She was apologetic she couldn’t fit me in next week so I re-assured her my heart has been fast for a long time so it can wait a little longer. And I only have to wait 2 weeks anyway! Suits me well as I have the phsyio specialist next week with my back which is a 45 minutes assessment so that’s my big task for next week.

I’m relieved I don’t need to stop the amitripyline as it is very effective for pain control especially my chronic back pain and migraines.  I have a little seed of doubt as to whether it could be triggering POTS but it is a relatively small dose and as it’s effective if the POTS can be treated successfully then it’s not an issue anyway.

UPDATE 4th May 2011: Had my ECG today which was fun thanks to a lovely Sister even if my heart rate was a bit scarey! Hitting 129bpm just sitting down I think due to getting up early, washing, dressing and walking from the car to the consulting room. She tried to do it standing up but the signal kept cutting out so she took one sitting and one lying down. When I lay down it went from 129bpm to 108bpm but then climbed again. Not a good indication of POTS or not because I never got relaxed enough and was recovery from moving around. But definately showing my fast heart rate in action! I guess I’ll find out if there’s any underlying cause from the ECG when I see my doc again in 2 weeks.

Meanhwile I’ve been told by a ME friend that just a 10mg dose of amitriptyline was enough to take her resting heart rate from an average 70-80bpm pre-amitriptyline to 100bpm on the tablets.  So I think when I see the doc our first line of action should be to withdraw the amitriptyline to see what effect that has.  Unless she thinks we should treat it anyway as amitriptyline has been so effective for pain and migraines for me. Plus there are other tricyclics with less side effects I could try (which are more expensive) which is something else to throw into the mix. Doxepin and Trimipramine being my shortlisted favourites to try (in that order). Doxepin is good for migraines, chronic pain and IBS and eczema as a bonus and it’s more sedating so could help more with quality sleep.

I’ll have to see what the Lovely GP thinks!

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

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.


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.