Archive for the 'PracticalStuff' 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

Losing Weight with ME

I’ve been trying on and off to lose my excess weight since I gained it which is going on 12-13 years. I did lost a stone early on and another stone and half some years ago but it’s crept back up and I’ve been flipping back and forth a stone.

I turn 40 next Autumn and I don’t want to still be fat by then. So it’s a good milestone to give me the incentive to finally focus and lose the extra weight. But it’s not easy with my illness.  Exercise is very difficult and cardio exercise pretty impossible without worsening my overall condition. Strengthening work, toning and stretching are possibilities but most be done modestly.  Add in that my gut issues already restrict what I can eat and that helpful things for my gut don’t always fit in with healthy eating plans (lots of soluble fibre like white rice, white bread, potato) and it’s going to be a tricky balancing act.

I’m 8 weeks in to my healthy eating and upping my stretching/toning/moving about. I’ve lost 7lbs so far which I’m really pleased about. I’ve also lost so far 3″ off my bust, 1.5″ off my waist, 2″ off my hips and 1.5″ off my ankles (who knew I had that much to lose off my ankles!).

I’ve had some pilates exercises that the physio gave me for my back problem many years ago which for most people would be considered the warm up to a main session.  I’ve also added in a sitting down workout on DVD by Rosemary Conley which is achievable for me on better days. It’s a 12 minute routine, all seated, which can be made a little more energetic if that suits.  But it’s stretching muscles I don’t normally use so it’s a big thumbs up from me.

I’ve dug out my fitness gym ball to do a little bouncing and also some chest exercises.  Some work with small weights is a definate possibility for me in my current level of function though I have to be careful as even that sort of exertion takes it’s toll. Using a rebounder for ME/CFS is another possibility for low impact exercise that will get my lymphatic system working (apparently the PT Rebounder is the one to get as others as not soft enough for PWME)

I have a 2nd DVD to try which is aimed at seniors by Jane Fonda but looks a bit more active than the Conley one.  Some of the exercises are standing up (using the chair for support) and the first routine is 20 minutes. So I’m working up to that.

[UPDATE 13 April 2012: The Jane Fonda Prime Time Fit & Strong DVD is an achievable workout for me. It’s 25 minutes long and alternates between seated toning exercises and standing exercises where you can use the chair as a support. Whilst it’s a longer session there’s no cardio element to it at all, no lunges or jumping. Just using your muscles. She goes at a moderate pace with quite a few reps of exercises but it’s been fine for me. There’s quite a bit of chat about getting older as it is aimed at seniors but a lot of the things apply to myself with chronic illness such as the importance of balance exercises to avoid falls, ankle strengthening to avoid stumbles and by how much seniors can build muscle mass with simple exercises. I’ve noticed it’s helping with flexibility and with posture. It’s also good that it’s different exercises to the ones on my other DVD and I get some variety on those better days.

I’m also now doing the warm up and some extra exercises suitable for my back injury from Lynne Robinson’s Pilates DVD. The warm up is slow paced, all the exercises are done lying down on a mat and it’s a more gentle relaxing set of exercises for those not so good days.]

I’m also thinking I’ll try using the Eye Toy we have for my husband’s PS2 and some silly games that get the arms moving. If I do a short session sitting down it’s fun and it’s get the blood pumping hopefully without overdoing the cardio.  I also bought Kinetic for PS2 Eye Toy which is a fitness programme and mini games based on cardio, toning, mind/body (like Tai Chi and yoga) and some martial arts.  I’m still exploring that to see if it is suitable for me. This is my budget version of getting a Wii. The Wii is used by quite a few disabled people to help with fitness but it’s a bit out of my budget at the moment.

[UPDATE 13 April 2012: PS2 Kinetic using the Eye Toy has proved a bit challenging not least because you need 3-4 metres of clear space from the tv even with the special lens adapter for the Eye Toy. I have used the Play for Eye Toy games again but the cardio aspect is a bit too challenging. I can stretch and tone but cardio type work leaves me flattened within minutes.]

The other thing is just to try to stretch muscles and move my feet when I can without going totally crazy.  It’s a tricky balancing act and so easy to wear myself out as my motivation to be active is very strong.

I’m using the site MyFitnessPal to help my weight loss. It’s works by tracking calorie intake and exercise, has a strong community and a large database of foods which you can add to.  Calorie tracking alone isn’t enough but it does work out allowances of things like carbs and fat, so along the way I’m learning good choices and bad choices to keep on track and not feel hungry.  You enter your activity level, how much you want to lose and at what rate (I’ve opted for a pound a week) and it figures out the calorie intake appropriate to you.  Mine is currently 1400 calories a day.  The members forums have helped me learn good foods to eat to not go hungry and we’ve made lots of small changes to our diet.  Seeing as my main tool for weight loss is going to be diet this is a really positive step.

I’ve made a few friends on the site who also have health problems that limit that exercise abilities. I’ve even met someone with ME who manages to work part time that manages to do some mild cardio using the Wii and kettlebell work (kettlebell workout for ME/CFS).

thermal comparison of a 250 lb woman and 120 lb woman and what that extra weight does to the muscloskeletal and visceral system

I’m drinking more fluids, eating more healthily and doing specific exercises to help stretch and tone. I have 50lbs to lose in total, 43lbs to go and if the plan works I’ll be at target this time next year.  It’s a long journey but slow and steady wins the race.  I’m giving myself rewards for every 5lbs lost and I keep looking at beautiful clothes I can wear once I’ve lost the weight 🙂

I figure losing 50lbs has to make everyday life a little easier and be so much better for my body especially going into my forties and my risk factors increasing for certain diseases.  I’ve finally made the connection that fat isn’t just love handles and thick thighs but fat is around my internal organs too. I have to lose the weight so my body doesn’t have to work so hard.  It’s not going to be easy but I’m determined to make it stick this time.

Created by MyFitnessPal – Free Calorie Counter

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.

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.

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.

My Secret Shame

Privately, secretly, I carry a terrible shame. It’s all about the state of my home.

I’ve been sick to the point of incapacity for 2 and a half years now. So it’s been over 2 and a half years since I could do any proper housework. 

Growler is brilliant and he does the best he can.  But there are still jobs that don’t get done.

Clutter is piled up around the house. Stuff put in piles and left in boxes to sort out another day. Another day which never comes.

The garden which I love continues to grow wildly with no-one tending it.  Growler does the lawns and will apply weedkiller when asked.  But the hedges and shrubs grow and grow.  Last year I paid £400 for a firm to spend one day cutting things back to a tidy and manageable level.  Once the warm weather comes most of the work will be undone.

I established some time ago that I am not well enough to tackle the gardening even in small amounts.  It is physically too taxing for me.

The same for housework.  I do the odd thing infrequently but it’s such a tiny amount. Largely things stays the way they are and things gets dirtier.  Clutter mounts up.

I am utterly ashamed.  I am ashamed of the way I live, the way I have become.  Of my failures which are evident in the dust and the grime, in the hedge encroaching the pavement, in the shrubs closing in.

I am so ashamed if I think about it for too long I could weep.  So ashamed I don’t invite people to stay or to visit because they’ll see how bad it is and see my failures.

I wonder if the people who 2 years ago said “If there’s anything I can do to help…” really meant it.  Whether they meant fetching a pint of milk or whether they would get their hands dirty and do the things I really need help with.  But I’m too ashamed to ask and too ashamed to tell them the grotty jobs that need to be done.

Because where I need help is the things which aren’t cosy and aren’t talked about.  I need people to come and clean for a hour, or come and garden for a hour.  To come and sort out clutter and ferry stuff to the charity shop or flog it on ebay for me.

I guess there’s a quiet thought about cleaning and gardening and decluttering. That I have a husband so he can do it.  But there’s only so much one man can do.  He works full time to support us both whilst caring for me.  He takes care of all the bills, washes and cooks, hoovers and looks after the cat, shops and takes out the rubbish. He baths me, he plans for me, he leaves me food and drink, flasks and cooked meals to get me through the day.  He soothes me when I’m pain and when I’m not coping.  He holds me when I’m scared and when my heart is breaking.  He worries about me 24/7.

How can I ask him to do anymore?  How long before he buckles from the load?

It shouldn’t fall to just one person.

So I need help. And the shame stings.

I am ashamed I don’t have friends.  That while I was well I didn’t make friendships which means now I have very few people to call on.  I suppose there’s a chance even if I had they wouldn’t have stuck around until now.  Chronic illness changes friendships I know.  But I will never know because I didn’t give more of myself to friendship when I could.

So it seems that the only people who really want to get stuck in to help are Growler and my mother. My mother who is 65 and has her heart problems so is not up to the task but so desperately wants to make things better for me.  I won’t watch my mother give herself palpatations to save my own health.

I don’t want to blame other people.  But I wish others ‘got it’ a bit more.  I’m not going to ring them up and say “will you come clean my floors for me?”, “will you come wipe the mould off the window frames for me?”, “will you come clean out my drain?”, will you come wipe down the doorframes where the cat rubs his grotty face against?”. 

Maybe they think I’m happy to live like this.  Maybe they’ve forgotten about me.  Maybe they are waiting for me to ask.  Maybe they don’t really want to help.  Maybe I don’t really have anyone to call on.  Or maybe they think that it’s been 2 years so I must have found a way to cope by now (rather than it’s been 2 years and things must be really bad by now).  Maybe they’re just too busy.

It’s almost certainly my fault for staying quiet.  But how do you ask for help with things that are so personal and are your failings?

I know some people say “my house is a tip” but I really mean it when I say mine is dirty.  I know if I was well I could get through most of it in a weekend (maybe two).  If I just had a healthy young substitute.

I can’t afford to pay for a cleaner. I worry what they would think.  I’m also told they will usually only clean once you’ve tidied which isn’t much use to me.

I’m frightened and ashamed to ask Social Services if they can help.  Frightened that their idea of helping will be to offer help with meals and washing when what I want is help with cleaning and chores.

I want to run away.  I want to leave this house and find a clean new one.  To start afresh with less rooms and less garden.  But I worry sick to my stomach that I’d just make the new place as dirty as this one.  That I’d infect it.  I’d have a new shame to face.  Besides the obstacles to moving are not insignificant and would mean getting rid of the clutter and cleaning this place anyway.

I’m seriously considering trying to hire a gardener because the thought of it getting more out of control makes me feel nauseous.  That if I can find someone who’ll come just twice a month maybe I can just spend the money and make sacrifices elsewhere.

As for the clutter and the cleaning … I started a few weeks ago with Growler to do half an hour of ‘chuck or recycle’ each weekend.  We made a small but encouraging dent.  So it could work.  Less stuff would make cleaning a lot easier. For someone.

I’m wondering whether to directly ask my brother for help. Perhaps with ferrying piles of stuff to the charity shop.  He lived with us for two years and never volunteered to help me.  So it’s a long shot and has potential to fail.

Last time I gathered my courage and when a friend voluntereed to help do my filing I was elated that someone was going to help.  And that they were happy to do it.  She never came.   Her own life get too busy.  The filing is still not done a year later.  It was a crushing disappointment.

I considered writing an open letter to everyone I know saying “I need help”.  I need help with decluttering and cleaning and I need people who won’t judge me for letting things get so bad.  But I suspect the one’s who would step up to help would be the ones who have enough on their plates and/or are the most elderly.  Or that I’d be overwhelmed with people wanting to help but none of it would come. 

If they did come I am sure I would feel overhwelmed by the gift and by the highlighting of my own inabilities.  But maybe that’s just something I have to face.

So what to do. What to do.

Seems my options are:

a) Keep ignoring the problem (it will only get worse). Not an option really.

b) Chip away at it little by little and hope I can catch up eventually without giving myself any setbacks

c) Cry out loudly for help and swallow my pride, hide my shame

Got My Blue Badge

Disabled Badge Holders Only - photograph by gregwake from Flickr

Photograph by gregwake from Flickr

Well I should have known I’d have to say “Yes Mum you were right”.  The local authority have granted my application for a Blue Badge and it arrived this morning in the post.  Yes, I should have applied for it before but “whoohoo” now I have one :o)

The Blue Badge scheme runs across Europe (and other affliate countries) and allows disabled drivers and passengers to use disabled parking and special parking concessions to give easier access to facilities and services, shopping and leisure, etc.

It means that when Growler or my dad take me out somewhere we can actually now park in the disabled bays nearer the entrances to places, with space to get the wheelchair out and (hopefully) not have to tackle anymore blumin gravel car park surfaces.  Gravel is not good for those with growling bowels!

Now I’m deciding whether to spend £25 on a Blue Badge protector, which is a plastic case for the badge that locks to the steering wheel, as theft of Blue Badges is apparently quite high.  I don’t want Growler’s car window smashed for the sake of nicking my blue badge.  But in the meantime – we get to park close to places! Yeah!  Oh and lots of time for free which is an added bonus (and why theft of badges is so high I suspect).

Once again I am sure I owe a debt to my Lovely GP who filled in my doctors supporting bit of the form.

In other news I am feeling distinctly wiped out this week.  Wondering if the extra bits and bobs of “home alone” is mounting up, or if it’s simply waking earlier than usual, or (improbable but solvable) because I ran out of B12 tablets last week and have had a gap in taking my high B12 dose every day.

But I have managed to paint a commissioned piece this week (my brother for his girlfriend’s Christmas pressie and subject matter is strictly secret) so it’s not all bad.

photograph by jamie hladky

photograph by jamie hladky

Growler has had a hectic week after our washing machine finally died and for the last week he’s been running down to my borther’s to use his machine inbetween making lunch for me and whizzing back and fro from the office.  New washing machine due to be delivered this Thursday and I have been in charge of sorting it all out.  Dipped into my savings to pay for it even. 

So even if I can’t actually help DO the washing at least I have made a small contribution to the daily doings of home by researching, purchasing and taking delivery of said appliance.  Although Growler has to disconnect the old one for them to take it away and re-arrange things in our back porch to let the men have access to install the new one.  And it’s very cobwebby in there so he will have to be extra brave!

I am also chomping crystallised ginger in an effort to combat dizziness and a hint of nausea.  One good thing is that because I’m not keen on ginger or on that hot burning sensation in my mouth it’s also making me drink lots of water – which is also supposed to good for dizziness.

I am itching to start my Christmas shopping (internet style) just to get it done but waiting for next months credit card statement to roll around.  I am equally dreading writing Christmas cards but think I should start soon because it took me absolutely ages over many sittings to do it last year.  Growler is standing firm about no decorations until at least December :o( but I guess that will be here soon enough!

And just over a year after I legally finished my contract with my old work place the Inland Revenue have finally been in touch to see what I’ve been up to for the last 12 months.  Big fat zero Mr Inland Revenue. Big fat zero income.  I had to tick “unemployed” which really annoys me even though it’s just a technicality.  i want a “I’m in limbo” box to tick please.


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.