Archive for August, 2008

Holiday Was Great! Now I Am Weary

The ten day holiday in North East England was great. I really enjoyed it. It was great to spend time with Growler and have a break from the old routine. (I took LOTS of photos which you can see here)

What was brilliant (and quite amazing) was I managed to get up before lunch every day for ten days.  More than that I went out somewhere 7 days straight and a total of 9 days out of the 10! OK so we’re talking managing any long hikes or excitement – everything was still moderated and planned within energy/health levels. But still that’s the first time in about 2 years I can claim that level of doing stuff.

I also knew and could feel that I was pushing myself harder than normal. Not crazy levels of pushing but pushing all the same. It was a calculated (well guestimated) risk.

Sure enough I was pretty wiped when we got home but recovery seemed easier (quicker) than 6 months ago. This week I got my period which always adds to the weariness and so I find myself back in bed until mid afternoon today, staying in my pyjamas, not having a wash every day and walking on the edge of a headache or migraine with my glands in my neck throbbing like the early days. 

On holiday I slept pretty well, mananging to get off to sleep like old times most nights and those that took a little longer were still better than I’ve experienced this last 6 months.  Back at home and the difficulty dropping off to sleep has returned.  We’ve a few theories but still working on that one.

All of that said I am not gloomy and things are pretty OK.  I’m close to finishing my second painting (acrylic on canvas) since I returned from holiday thanks to shaking up my routine and diverting more time to offline activities.  I guess the hours of painting are also a contribing factor to my current wiped out feelings today.

I’m hoping that my ME is improving a little and I am least headed back to levels of function previous to the last 2 viruses I had (Christmas 2007 and summer 2007) which lasted for months and seemed to set me back a long way. As ever with this illness though it’s taking things a little at a time, pacing and moderating and planning and trying to lead a simple life. 

I tell you I’m feeling horrible, yet I also say I may be improving and I see how these things sound at odds to each other.  But it’s not always about dramatic improvement or even improvement measured by a non-ME standard. 

On Sunday I went to an art gallery (in a wheelchair pushed by Growler) and saw wonderful photographs (by Ansell Adams) which made me think and feel and question. Then we went to my mothers and I sat and talked for over an hour before my words started to get mixed up or trapped into a stuttering loop.  While that sounds pretty awful I am remembering when I couldn’t have done even this much.  I remember when just a conversation (without any outing or other stimulation) would leave me fumbling with speech and struggling to comprehend from the first sentence. So to me – all of this is progress and a joy.

An Interlude

I’m going to be offline for 10 days or so with Growler. I’m ready for a change of scene and routine (even if I am mildly anxious about what to take and leaving the house!).

If you leave a comment on any of the posts it’s probably going to end up in the moderation queue unless you are a regular visitor.  But I’ll see it when I get back online and it will get published then.

Right. Best make a check list of medication and suppliments as that’s about the only thing I have written a list for ;o)

This Week’s Stuff

My thoughts are a bit jumbled but this is what’s happened in the last week.

Stopped taking Mebeverine for IBS – I read conflicting reports that Mebeverine could be taken for IBS-C and that it could in fact cause constipation.  As I have been having many problems with constipation and bowel spasms I decided to try meals without Mebeverine. I’ve been taking it at least twice a day (with lunch and evening meal) for well over a year.  Now I’ve been 4 days without it and my constipation is better and my spasms much less. Looks like a success bu will continue to monitor the situation before committing to not taking it, or at least only taking it if IBS-D makes a re-appearance.

Had my 2nd wedding anniversary – That was yesterday and we managed to go out for lunch and a wheelie walk and had a very lovely day. I blogged some photos on my art blog from the day. We’re not limited to spending quality time together and being loved up on anniversaries and valentines – but it’s still good to celebrate and remember our commitment to each other. We’ve faced a lot of challenges just in this 2 years of marriage as my incapactity with ME/CFS began shortly before we were married.  But we’re a strong team and our love is thriving.

Spent time with my Dad – Spent a couple of hours with my dad and his partner on a gorgeously sunny Sunday afternoon.  We don’t get to visit as often as I’d like even though they are only 10 miles from us.  Then this afternoon I went out with my dad (just the 2 of us) for a cup of tea and another sit in the sunshine. We’ve decided we need to do more of seeing each other one on one.  My dad loves Growler but he also wants to have a relationship with me where Growler isn’t always there doing the ‘carer’ role.  We all think this is a great idea – I get to have different experiences, Growler gets some time off and time alone/to do his own thing, plus me and my dad get to renew our own relationship.

Sorted a holiday – Well Growler did all the sorting last week but I sent for a few tourism leaflets for ideas f things to do while we’re there. We go next week for 10 days up to Yorkshire, then County Durham and to explore the North East. Never been in that part of the country before and am really excited about all the things to see.  Even if I am not up to doing a lot both Growler and me are looking forward to a change of scene and change of routine.  Hurrah!

Ran out of Q10 – Forgot to order more Q10 capsules when Growler told me my stocks were running low and so ran out totally this week.  Then couldn’t order more from the super speedy and competively priced quickvit because I can’t get Verified By Visa security system to work and let me pay!  Sourced some from an alternative supplier with PayPal but it does mean I’ve had (am having) a few days without my 200mg of Q10.  Oh well.

Drawing, Sculpting and Photographing – It’s been a lovely creative patch kickstarted by my plan to try and draw every day for 2 and a half weeks.  So as well as my usual photographing loads of things I’ve also done a bit of drawing and even did a spontaneous bit of sculpture having recycled some wire from some spiral notebooks which about from …

Did a load of shredding – Including going through a bag of stuff from my old work place which I officially left last October. I shredded all those receipts and invoices from deliveries I’ve been piling up for the last 6 months and recycled and/or shredded a load of stuff from work including my precious work notebooks.  It was good looking at those pages of essential important information and them now being totally pointless and irrelevant! I may be doing it a little at a time over a loooong period of time but maybe I will get stuff sorted and cleared eventually.


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