Archive for the 'FeelingBetter' Category

Tough Fornight

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

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

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

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

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

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

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

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

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

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

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

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

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

IBS Taming: Phase 2 Attempt

I’ve been taming my horrid IBS flare for nearly a month now.  Since I last reported that I had never been so happy to eat a bowl of rice I have eaten many many more bowls and continued to be overjoyed by it every time.

In fact the last month has consisted mainly of rice, tofu, mushrooms, carrots, rice based pasta and jacket potatoes.  And lashing of soy sauce.  Plus crisped rice cereal, soy milk and bananas.  I’ve also continued to enjoy my wheat free pikelets and discovered wheat free pretzels.  Wheat is ok for this IBS Challenge provided it’s not whole wheat but I’ve had some adverse reaction to wheat whereas rice has been my friend.

Now my IBS is fairly stable on this Super Soluble Fibre diet (unless I exert after eating or am mega tired which makes me struggle despite friendly food), now I’m attempting Phase 2.  The introduction of some insoluble fibre.  Da da daaaa!

Yes folks it’s rice cereal followed by a fruit smoothie which contains fruit with some roughage blended into oblivion.

Problem is that even though it’s a small amount of insoluble fibre and even though I’m taking it with a good soluble fibre base … it leaves me feeling a bit bloated, full of gas and like I’m teetering on the edge of IBS spasm hell.

I don’t know if this is normal and it’s a matter of letting your system adjust slowly.  Or if this is a warning sign that my body is not ready for it.  So I’m going to have to just try it and see.  At least I’m not bored with m restricted diet.  How you can be bored of food if you can eat it without feeling ill?  ME/CFS is so weird.

Back on D-Ribose – It’s Worth It For Me

After a 2 week break from D-Ribose I was feeling really grotty, run down and utterly exhausted.  It was only a few percent on the ability scale but it made a huge difference.

The only way for me to be sure that stopping taking D-Ribose had made that difference would be once I started to take it again if things improved.  They did.

I started back on D-Ribose 6 days ago.  I took a 3 times daily dose for the first 3 days to have a little kickstart but went back to my usual 2 after that as I’m a little low on supplies and cash.

Within 2 days I was back to just about the level I was before I stopped the D-Ribose.  Even with my period (which leaves me in a sort of slow motion with heavy limbs) I felt better.

image by babydinosaur on flickr

image by babydinosaur on flickr

As for tummy symptoms I experience the, THE worst constipation ever whilst being off D-Ribose.  So maybe in fact it does make things a bit loose but that actually balances things out for me.  Aside from that episode (caused I think by frequenting the wheat biscuits combined with 2 days of co-codamol and starting my period which seems to trigger IBS symptoms) there wasn’t much noticeable difference in tummy symptoms whilst I was off D-Ribose.

So for me personally it’s worth taking D-Ribose.  I hadn’t been anticipating quite the drop in ability level that I experienced and it took me by surprise.  But it did prove to me that I am getting a benefit from it – even if it’s so small a healthy person wouldn’t notice it.  It makes a big difference to me though.

Probiotics, Prescription Experiment and Mobile Hairdresser

Neither a restrictive diet or medication has been saving me from my guts these past few weeks.  The flare has been particularly bad on some days – cramping, bubbling, gas and pain.  I thought I’d try a new tactic and see if probiotics could help – maybe I had some kind of inbalance or infection.

After just a few days I can say it’s not perfect but it’s suddenly a hell of a lot better.  I actually had 2 days gut pain free which is a massive relief after struggling with it for a while now.

Also a friend who also takes amitriptyline for ME pain relief suggested taking my nightly dose earlier in the evening.  That the optimum time to take the tablets is 13 hours before you want to wake up.  Maybe this might help me to sleep – something else I’ve been struggling with these past few weeks.  Often not getting off to sleep until 12-2am despite being in bed at 10.30 as usual.

So this weekend I started taking my 20mg of Amitriptyline at 8pm instead of just as I get into bed.  So far it’s not adjusting how long I sleep for but I’m not worried about that.  I seem to have needed 10-12 hours of sleep this I got ME. 

It’s also not necessarily getting me off to sleep any quicker.  But a few adjustments like reading (or luxury being read to) are helping.

What it has been helping with is when I do wake up I’m not feeling groggy and foggy and heavy like I used to.  I feel much lighter and brighter.  Which in turn means I am feeling like getting out of bed earlier and able to think better and maybe do more.

I thought that groggy feeling was me with ME in the mornings.  Seems maybe most of it was amitriptyline hanging around.

Finally the mobile hairdresser I approached emailed me back and she’s coming the day after tomorrow.  I am very glad that I will soon have a hairstyle again.  But I’m not quite sure what style I want her to aim for.  So I have to get some ideas if I want to avoid being disappointed with the cut.  I’m sure she’s very competent but not a mind reader. 

Oh and it’s sunny out today.  Which is an added bonus.  I’m also really excited about getting on my new painting as it’s coming together well now (fingers crossed).  It’s lovely to have good news.

In A Room Full Of People

Last Friday Growler took me into Birmingham (UK) and we attended a network meeting of people who use social media like Twitter and blogs.

It was good to be out doing something positive and have the opportunity to network.  The room was full of people with about 50+ attendees and when I remarked how busy it was to the organiser she said it was about half the normal turn out.  Well, it was quite busy enough for me!

Being mainly housebound and not having even been in a work environment for 2 years a room full of people chatting and networking was a bit of a culture shock.  I (literally) sat on the sidelines really, absorbing the atmosphere and then chatting to a few people I’d met for the first time through Growler. 

Most people were standing while I needed to sit. The venue wasn’t wheelchair accessible but there were plenty of seats as almost everyone was on their own feet. I was glad to be on the sidelines really as I was able to keep myself calm and get used to just the sheer noise of chatter.

I did end up talking health and migraines to someone but it was still useful ;o)

20081128 lunch at handmade burger birmingham

We had lunch at the Handmade Burger Company and it was absolutely delicious! They do chicken, vegetarian and fish burgers as well as beef so I was well catered for.  I definately want to go back. I wish would deliver to my house!  But a treat once in a while is just as good.

The restaraunt was wheelchair accessible and the staff were really good, holding the doors open and re-arranging furniture to accomodate me (as I sprang out of the chair and told them I’d sit in a proper seat thanks!).

20081128 holga has a trip out to birmingham

Growler took me around the German Market in my wheelchair and I took a roll of film on my Holga camera which I really enjoyed doing.

It was good to be out and doing something different even if I mainly got to see backs and bottoms as Growler negotiated the crowds.  He didn’t see many of the stalls as he was too busy steering!

20081128 blue badge

I used my Blue Badge (disabled parking permit) for the first time and I was glad we had it!

It made the trip out so much easier than it has been previously.  We could park quite close to were we going  for a change!

I was pretty tired by the end of the day but I realise that I handled a lot more than I used to.  18 months ago just half an hour in that room full of chatter would have made me crumple from the stimulation.  Yet I spent over an hour there and talked to new people, then had lunch out, then a trip around the market and Christmas lights.  Quite an achievement. 

The following Monday I was really wiped out but I was ok again by Wednesday.

When people say I seem much better I say “not really” and dampen their expectations.  Because whilst I appear a lot brighter, am able to engage in conversation and remember things for myself, these things are transient.  With just a little over exertion they are gone again for a day or three.  And I am only able to have those moments of clarity and brightness because I manage my condition carefully and get a lot of support.

I will admit I am seeing now for myself that I am “better” than this time last year.  I seem to be getting stronger.  But every time I feel I am turning a corner a day or two later I hit a weary, wiped out day.  Maybe this is because I over do it a little on the good day – but if I do I can assure you it’s only with tiny things. I do not do big boom and bust – any boom is done in small actions alone.

So yes I am a bit better.  But not in the way that most people think they can see.  Well, that’s unfair of me – maybe they are seeing the small improvement and not making assumptions.  But I know when my hairdresser was busy saying “you really do look so much better” I couldn’t answer because after half an hour in the chair I felt like someone had squeezed the life out of me.  And that when I got home and into that evening and the next day I was slurring words and getting confused.  So yes, progress.  But no, not really better.

Dangerous Days

I’m feeling not too bad at all.  It’s dangerous days.

I’m still tired, always tired.  But … not too bad.  Well yes my IBS is still hanging in the balance but a little better. But I don’t feel – overall – too bad at all.

Friday I met a friend in town.  We talked and had a drink and went out for dinner.  I walked (not very far) from cafe to bar to restaraunt.  In the morning I felt zapped.  I had my D-Ribose, got washed and dressed, headed out with Growler to feed a friends cat a few miles away.  By lunch I was tired but I wasn’t crashing.

My friend from Friday had made a weekend of it and came to mine that afternoon.  We talked and just sort of hung out.  We played with the cat, she dug some weeds in the garden for me and planted a flower in the garden I’d had in a pot for a year and not managed to plant myself.  I was tired but not too bad at all.  Second dose of D-Ribose of the day and, well, I stayed tired but ok for the rest of the day.  My brain slowed a little in the evening but it was manageable.

Today, this morning, the next morning I feel … well, tired, but not too bad.  I find myself suspicious.  I’ve read a lot of blogs and forum messages of people with ME who say “I think I might be better – hurrah” and then a week later have crashed again.  So I’m trying to take it slow and steady.  Not that I am doing a lot more than usual – just enjoying the not feeling crushed by fatigue thing.

It’s been 9 weeks since I started taking D-Ribose.  I definately feel a benefit although it’s not a miracle worker.  My gain would be so tiny to a generally healthy person it probably wouldn’t be considered a gain.  But it’s my measure that counts in all of this.

I’ve also been taking 500mg of L-Carnitine and 200mg of Q10 for over a month.  Is it helping?  I have no idea.

I do have a sense that I am physically capable of doing more.  That I can gradually and carefully start to build my strength.  Start to walk a could of minutes a day and build it up very slowly – start to use my muscles and get a bit stronger.  That whilst I still get tired, still get IBS, still get migraines, still get sore glands, still get aches – that I am able to be a little more resilitant to these symptoms and not push them beyond manageable levels.  And that moving and gaining strength could help ease some of these problems.

Now is that just applying a “normal” healthy person mentality to getting well?  Am I thinking like I always did before ME that you work to get better?  Am I tricked into thinking in old ways about an illness which isn’t something with a linear recovery or progression and I know doesn’t play by the normal sickness rules?  Or is this sense my body telling me what it needs – just like when I crave certain foods it seems to be because my body needs the nutrition?

What it feels like is that I’ve toddled along in my usual routine and levels of (non) activity and whilst I haven’t been looking – over the past month – my body has gotten a little better.  But because I haven’t been using those extra teeny tiny increases in capacity, looking back it seems a larger measure now.  Now large isn’t really large – it’s the difference between getting out of bed at 2pm and not 4pm.  Actually it’s feeling I may be able to get out of bed at 11am – or earlier – and that hasn’t been the case in the everday for maybe a year.

I don’t think I can know the answers right now about what I can and can’t do and what it might be or not be.

I think the only sensible thing to do is to keep trying and perhaps gently increase my activity levels very very slowly.  This means a new phase of determinitation and grit not to just attack things head on and whizz around in a flurry of activity.  If I have a migraine onset or an IBS flare do I stop?  Or do try again tomorrow?  Or do I keep gently pushing?

It’s those eternal ME questions I think.  It’s just that this is the first time since I’ve started coming to terms with this illness that I’ve started to see a real improvement and because I am now more concious I want to try and get it right.  But who can really know what right is?  So I just have to try.  Or not try.  And aybe the results will be the same whichever I choose.

And now my head is starting to hurt from writng this post and I wonder whether I have really made any improvement at all!


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
New stuff is added all the time.