Archive for the 'CFS' Category

Woman Stuff

I have a suspicion that peri-menopause may be upon me but being on Cerazette (progestrone pill) it’s difficult to know for sure. I’ve been experiencing anxiety with some panic attacks in a pattern and manner that feels hormonal. It’s a bit like being a teenager again in terms of the presentation of mood swings. Also things in my downstairs area are … not quite right.

I had a routine smear last year which was incredibly painful because the nurse discovered (read banged into) a cervical polyp. A GP referral to hospital had that removed on the day all very quick and easy. But it did add to my feeling of doom that I’m lumbering into middle age and things are inevitably going awry.

I had a recurrence of vulva itching recently and had treated it as a skin condition. When I had this last year it turned out to be a consequence of the thrush cream I had used to treat what I thought was fungal. So the antifungals made me more itchy than ever. But thrush had triggered the initial itch.

I’ve had another bout of thrush, which reminded me that I feel I basically have it more or less most of the time internally as I’ve been older. But it doesn’t often spread to external so maybe it’s just my normal to be uncomfortable sometimes.  Anyway seemed to be thrush this time so I treated with a pill 5 days ago. But in my reading found that vaginal dryness can be a factor for recurring infections. I don’t really want to take long courses of anti-fungals (despite stocking up from an online pharmacy to do just that!) so I did some reading to see if I could redress the balance another way and try to see off recurring infection.

I’ve started taking ordinary probiotics and am due to start probiotics specific to redressing female areas when my delivery arrives. I’m looking to take Lactobacillus rhamnosus and Lactobacillus reuteri specifically. These are available from Optibac and Jarrow as special female formulas but are pricey. I found a similar product from Swanson which contains other helpful stuff too.

Probiotics for Women – Lactobacillus rhamnosus and Lactobacillus reuteri

I’m also going to try a vaginal moisturiser. I looked for ages for natural stuff when I had the vulva itching and have used both Badger Nappy Balm and Diprobase. But for internal I had struggled to find anything that was full of stuff some articles said to avoid. Then by accident I found Multi-Gyn Actigel which not only is supposed to help boost your natural secretions but also prevents and treats bacterial vaginosis.

So for now probiotics and actigel. Hopefully that will make things happier and more comfortable.


Dysautomnia – Hunt for Help

I am much more knowledgeable about dysautomnia than I was when I last pursued a diagnosis in 2011. I’ve been wanting to pursue it for a long time but screening for gallbladder surgery has brought things to a head. My pre-op and subsequent ECG showed sinus tachycardia (and my blood pressure was a concern too). I was worried, knowing that tachycardia is a norm for me, but being someone who is suggesting why that might be rather than having a diagnosis.

I raised concerns with the surgeon and asked my GP for a cardiology referral in an attempt to hurry things along.  My surgeon opted to wait for an opinion, or rather an OK from the cardiologist, suspending me from the surgery waiting list.

Stress and anxiety now mounting because I knew the chance of landing with a cardiologist who was even familiar with dysautomnia, let alone capable of diagnosis and treatment seemed slim. And then there was the timescale that seeing an NHS cardiologist and waiting for tests and follow up would take. I could see surgery delayed until summer or later meaning I’d pain, nausea and problems for over a year.

I’m so fortunate that a family member, seeing my distress and position, offered to pay for me to pursue a diagnosis, explanation and an OK for my surgeon privately and therefore quickly. I have to say I struggled a lot with the generosity of the offer, the implications of cost and my worth to be invested in. But that’s another post.

Yesterday I saw my selected autonomic specialist in Leicester. We ended up taking about an hour and a quarter of his time, covering my ME history as well as the suspected POTS. He was interested in my home 10 minute standing tests for POTS and kept my prepared info.


He examined me thoroughly and perfromed a 3 minute active stand test.

He suspected I do not have classic POTS but that perhaps I have some mild dysautomnia. He wasn’t unduly worried about the history and stats I was giving him. But certainly there is sinus tachycardia which would benefit from treatment. The ECG showed sinus tachycardia and a weak pulse which strengthened his view that treatment could be beneficial.

He will ask my GP to prescribe Ivabradine, his preferred option, as it slows the heart without the side effect of tiredness that beta-blockers often come with. But as a 2nd option, if the GP is reluctant to prescribe Ivabradine (which is new, off licence and expensive) then he’s prescribed a beta-blocker. He also gave me the choice of Ivabradine privately but at about £60 a month it’s a very expensive option to self fund.

He’s asking for a NHS 24 hour urine collection test to exclude rare adrenal condition via my GP. And a thyroid test would be a good idea.

Once my heart rate is slowed I’ll be back for a private EKG to exclude any underlying physical problems. Then, after a follow up, referred back to the NHS in Leicester for autonomic testing, which may take time with waiting lists. But as he is addressing my immediate concern by writing to my surgeon giving the all clear to operate with his clinical findings, time I can afford.

The best thing was having an hour to talk to the consultant without pressure. It really did take that whole hour (and a bit!) to talk about everything and even then I had to cut short some of the ME stuff and steer him more towards OI stuff. We certainly got a lot out of it, not least being the first doctor to see my tachycardia and actually do something about it, namely treatment and further testing. It felt at times that he was being dismissive of my symptoms and stats, but I think after asking him that it was that he was framing my level of dysautomnia against the spectrum. Sort of reassuring me  not to be unduly worried if you like.

He’s not dismissing POTS totally because autonomic testing will show more anyway. My baseline HR was so high to start with (being in the doctors office and a bit anxious) that he felt the test couldn’t show POTS. Like my home tests I was raising less than 30bpm but going over 120bpm, but his opinion was that wasn’t a clear indication as my starting resting HR was so elevated. His opinion was that my BP rising on standing was a normal reaction.

I feel others specialists would interpret my results differently. He is an advocate of the 3 minute stand test, feeling that if an autonomic reaction is going to happen it happens quickly and anything more is something else I suppose. I’m not a huge fan of this approach, but it’s the specialist I’ve got so I have to work with that. And the specialist I’ve got is a huge improvement on the big fat zero I had before. And I am getting treatment which would be the same for POTS anyway so the end result is much the same. Trying to be relaxed and philosophical about it because that’s the reality I have to deal with.







365 Days of Weight Loss with ME

It’s my 365th day of weight loss using and I’ve logged my food and exercise every day since I made the decisions to lose the weight.

I’ve lost a smidge off 2.5 stone.
I’ve lost 7″ of my waist, hips and bust.
I’ve even lost 2.75″ off my ankles and I never considered I had fat ankles before!

 photo 7342f173-9ad9-447b-b6e1-d80e10fbd497_zpsbd65ad28.jpg

I’ve kept to the plan by not denying myself anything bur rather have small moderate indulgences as treats and a day off every so often where I’ve gone over my allowance and just enjoyed it.

I’m set to sedentary on MFP because of my illness ME/CFS but I have been logging things other people would find trivial – like cooking or bleaching my hair – because for me those things take a lot of energy and are outside my normal activity levels.

When I started trying to exercise I had to push myself to do a 10 minute seated workout and managed just the warm up section of my Pilates DVD (mat work).  I used tiny hand weights and had to limit my exercise to every other day or so.  I started swimming in the summer and the first few times I managed maybe 4 lengths over 20 minutes with lots of resting inbetween.

Now I can do nearly an hour of floor based Pilates, 20 minutes of (gentle, low impact) workout DVD’s and am up to around 1.5kg weights (and increasing as I focus on some strength exercises).   I’m swimming 2-3 times a month and although I still have to rest between lengths and go gently on average I’m burning the calories MFP would expect me to for the time I’m in the pool – meaning I average out to a normal person in swimming terms 😉

Body Control Pilates, swimming and lately toning with weights has been achievable exercise which has given me results & benefits.

pilates diamond press

Pilates Diamond Press – Fantastic for My Posture

My stamina is better, my flexibility is much better, my back pain is less, I had to get smaller clothes. My posture has improved. I wouldn’t say I have more energy in a conventional sense because of how my illness robs me of energy but I do feel lighter and more able to do bouts of activity and recover reasonably quickly. When I push myself (which isn’t always a good idea with my illness) I can push myself for harder and longer before I feel I’m about to collapse.I’m about 70% to target which I hope to hit in May 2013 if I can get things back on track from my current plateau.  I’m taking delivery of a Fitbit this week and am hoping to start doing some walking to increase my cardio and see if I can build up gradually to doing more.

The Fitbit should provide some interesting information about the level of my activity during the day as it’s very sensitive.  Being so sedentary it’s sometimes difficult to know just what calorie allowance to use and I switched to Lightly Active in December as I was doing a bit more routinely but that led to my weight plateauing through January.  The Fitbit should help give me some insight into my average activity levels as well as encourage me to up my step count if possible.  Motivation to move isn’t the issue, as ever with ME/CFS it’s physical resources I lack not determination.

I have managed to increase my exercise over the year but I mainly owe my weight loss to diet and following a calorie controlled diet which is low in fat (like the Swank Low Fat Diet for MS I’ve mentioned before).

More background about how I’ve lost weight with ME/CFS:

Losing Weight with ME progress report – 6 months


Well it’s over 6 months of healthy eating and gentle exercise and I’ve lost 27lbs. Slightly behind schedule but that’s not the end of the world.

I’m needing to mix things up a little in the coming weeks to keep on track and build on the work I’ve done.  I’m somewhat more ill with some big exertions recently like a sort of holiday and family celebrations so the exercise has dropped off and the pull of comfort eating is stronger.  Especially as the weather declines and the days grow darker the lure of comfort food is strong.  But I’ve come half way so I’m not turning back now.

Losing the weight has made life a little easier and in some ways you could say I have more energy because there’s less of me to haul around.  But it hasn’t reversed my ME. I think eating less fat has been a big boost to my system.  I looked up the Swank Low Fat Diet for MS and happily discovered that I’ve actually been eating under the recommended fat levels for months now. A lot of the measures it suggests are part of my eating habits anyway with the adjustments I make for IBS.  So in that respect I think my ME has been helped a little.

I’ve been finding it tricky to tip the scales and measuring tape beyond my current 27lb loss into the 2nd half of my target weight loss.  Hoping that mixing some things up int he coming weeks with exercise and diet might give a kickstart to that.  One thing I did discover was that as I had been doing more exercise (like walking or gentle swimming) I hadn’t been eating back my exercise calories leaving me with a low balance of fuel for the days activities.  So I’ve been eating more on those days and that has helped.

It’s certainly not easy to lose weight when your activites and diet are so restricted. Adjusting to smaller portion sizes and discovering how little fuel my body actually needs on sedentary days has been a revelation. I’ll keep chipping away and hope by Spring I’m at my target.

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

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 It 11 Sep 2011

for ME Research

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