| Lindsey's profileLinz WorldBlogListsNetwork | Help |
|
|
October 03 16 days to go!There are 16 days to go (2 weeks, 2 days - eek!) until the West Berks ME & FM Group's Awareness Event. It's being held on Friday 19th October from 4pm till around 6pm, at the Baptist Church Hall on Cheap Street in Newbury. Highlights now confirmed include:
Quite a few local VIPs have said they are going to attend and Richard Benyon MP is hoping to make it. August 21 Public Awareness EventThe West Berks ME & FM Group is holding a Public Awareness Event on 19 October 2007, with help from the West Berks Neurological Alliance of which our group is an honorary member. The event will be held at the Baptist Church Hall, Cheap Street, Newbury, from 4pm. Support Group updateFollowing the resignation of our chair, Louise Whitbread, I'm now the chairperson of the West Berks ME & FM Group. I just hope I don't mess it up! We have a lot planned for the next few months so this is going to keep me pretty busy.
The group's aims are to improve awareness of ME & FM and to help people with ME or FM in the West Berks area in any way we can. Our website is www.wbme.org.
Upcoming meetings are:
August 28 Pub evening from 6pm, the Queens Hotel, Marketplace, Newbury
September 3 Coffee morning from 10.30am, Starbucks at Borders, Pinchington Retail Park, Pinchington Lane, Newbury
September 14 Informal meeting, 2-4pm, Hillcroft House, Rookes Lane, Thatcham
September 19 Coffee afternoon from 2pm, Wyevale Garden centre cafe, A4 near Thatcham
July 18 Support GroupA while back the West Berks ME Support Group officially opened it's doors to Fibromites too and I went along. The group was very friendly and although it had been running for less than a year with one meeting a month on the local hospital site, it obviously had potential. Now I'm feeling so much better I've gotten involved and the group is going places!
The group leader, Louise, was invited to a meeting of the West Berks Neurological Alliance who were meeting with the Commissioner of the local PCT (the woman who works out where the money goes!). She asked me to go with her and I did and it was inspirational. The WBNA are keen to welcome ME into their fold - there were representatives from the very political Reading ME Group there too - and FM is kinda sneaking under the radar. It may not yet be recognised as a neuro condition by the WHO, like ME is, but there's far more research proving that it is a neuro condition! The WBNA can get things done, can actually make changes. And we want to be involved with that and do our own bit.
As a result of all that, Louise, Katy and myself have formed a committee for the group as the first step in taking things to the next level (though I think we're jumping a few!
There are loads of plans getting under way - we're going to continue with the coffee events (I hosted one and it went down very well), we're starting a pub evening, we're going to organise evening talks and we're planning a big publicity/outreach event for later in the year. So watch this space (and the website!) and if you're in or around West Berkshire and looking for a ME or FM Support group, then contact the group at info@wbme.org. May 24 Medical Catch upWow, it's been ages since I last posted!
Having seen the Prof and stabilised on the 7 x 0.18mg Pramipexole dose, I actually got worse instead of better. At first I put it down to side effects, but it didn't ease and my IBS was playing up too. Light only dawned when I started burping burps that tasted distinctly fermented - the bloody Candida! All the symptoms could be traced back to that - the fatigue, the headaches, the GI upset, the thrush, the sore phlegmy throat, blah, blah, blah. And no wonder. Not only had my sugar intake gone up dramatically as I ate ginger cookies and drank sports drinks to counteract the Pramipexole side effects, but I was also taking Omeprazole, a PPI, for the same reason. The connection hadn't occurred to me before, but when re-reading Leon Chaitow's 'Candida Albicans', I read how any meds that suppress stomach acid production allow the Candida to grow even faster because of the higher pH. Doh!
So I put myself on the Candida diet (no sugars or refined flour and no yeast or fungi containing/contaminated or fermented foods) and stocked up on some supplements. I'd already filled my prescription for anti-fungal pessaries that I had always planned to use in conjunction with the diet and supplements when I got round to tackling this issue. My supplements are:
And that's on top of my 7 Pramipexole tablets a day...but at least they're tiny! Needless to say, I cut out the Omeprazole. I've been on the regime for 10 days now and it's already having an effect. The headaches are nearly gone, the fatigue and brain fog aren't as bad as they were and my IBS is calming down. I haven't been sticking to the regime 100%. Eating out is hard, especially when it comes to dessert!, though I did manage to not eat any of the delicious bread at The Square and am learning to love sparkling water. I'm not doing too badly at remembering to take the supplements, tho I will admit to having skipped a few doses because I couldn't face taking the yucky Yeast Cleanse capsules. And if I needed any proof that my symptoms are all Candida based and not Prami side effects, I even managed to take my Prami and then be driven for an hour to get home...with no nausea, let alone violent puking! May 02 Blogging Against Disablism DayWell it was yesterday and I completely failed to post.
However, one paragraph from the Never That Easy post for the day caught my eye...
Yeah! What she said.
For more posts for the Blogging Against Disablism Day, check out Diary of a Goldfish. May 01 Pacing sucksI'm so crap at pacing. Still!
So the upshot is that this week I'm in spoon payback mode whether I want to be or not. Yesterday I completely crashed out, went for a short nap and was hardly able to move after 3 hours sleep. Damn near slept through Archie's vet apt! And today, very very limited spoons. I had a post lunch and lie-down second coffee just to stay upright (my IBS does not like me!). I'm okay to pootle but not at anything hard for any length of time. I may go and sit in the shade and plant some small plants later, but that's about the limit of my ambition for today! April 26 So low on SpoonsArchie woke me up at 4am to go out and I couldn't get back to sleep, so at 5.30am I gave up trying and got up. I'm so tired. Still feeling achey and blah from whatever leurgy/flare I'm having and I had an awful evening yesterdaywith major nausea so really didn't need this.
And I can't even be out of spoons for tomorrow as I'm driving Si to work again, driving to Bristol to see the prof, going to Ikea, driving home and then picking Si up. April 25 Care assessmentI had my Care Assessment from Social Services today and it went great. A lovely lady called Cherry came round...even Archie liked her!
She's already got back to me to let me know that the financial assessment will be done only on me, not me and Si, so there is a chance I might get free or cheap help (they can charge up to £17/hour if you have an savings/real income! April 24 Low on SpoonsI think I'm comng down with somethng. I'm so low on spoons...struggled to stay up this morning and had a 3 hour nap and still didn't feel good.
April 21 RealityThis week has been a big reminder to me of the fragility of any good spell when you have FMS. I was doing so well and was getting used to feeling like that and I need to always remember that it won't neccesarily last and I mustn't take it for granted.
Admittedly, most of the issues this week have been due to the Pharmacy screw-up (and I'll be checking them thoroughly from now on!) but not all. Yesterday I got an ice-picks-behind-the-eyes headache (why are they called "aches" anyway?
My Fibro is never going to go away. As the Prof actually said, "the best we can work for is good enough management so that [I] can lead a relatively normal life". Taking the Pramipexole everyday for the rest of my life (or until they find something to counteract whatever's causing the low dopamine levels) may let me have alot more function and less pain, but I am never going to be "healthy". I will always have to pace myself, always count my Spoons (I now just have some more), always be ready to deal with transient symptoms like headaches and always be at risk of getting into a flare. I knew all this, but the brain is good at being illogical!
Maybe it's good I had this week before I'd got too accustomed to feeling better (by which I mean better, not cured). April 19 10 ways to make more time for yourselfThe Daily Headache brought an article on Chronic Babe to my attention: '10 ways to make more time for yourself - start today!' by Chronic Babe Editrix, Jenni Prokopy. It has made me realise that I'm not doing the best I could do for me.
1. Set a schedule for yourself, and do your best to stick to it.I had a good routine going but things have changed alot since then and then schedule no longer works very well. I have alot more energy and stamina now with my Pramipexole and the weather has been amazing, so instead of studying horticulture of a morning I've been more in the garden doing it for real. Jenni's idea of doing some work first thing and then stopping (in her case to go to the gym, in mine to garden) would probably work better and I could then make up the hours when I'm too tired to carry on weeding or whatever. 2. Live "off peak."I'm hopeless at remembering to do this, but it does make a big difference. Wednesday at 10am is a far better time to go to Tescos than Friday at 4pm! 3. Get served!I really should use Tescos delivery more often...the spoons and time going there myself takes are worth more than £4. The main reason I don't is that I forget more things buying online as I can't wander up and down aisles. However, if I did what Simon's been suggesting for ages and set up a standard shopping list, I'd forget less. We definitely need a cleaner. Cleaning take so many spoons and it's so low down in my priorities that it pretty much just doesn't get done. I do laundry, dishes (with a dishwasher!) and try to keep the kitchen surfaces hygienic and stop the floor from disappearing but that's about it. We're definitely getting a cleaner now Si's got this new job, but first we need to finish the floor edging in the hallway and finish the dishwasher surround in the kitchen so we can put the kickboards on properly. We've now made a resolution to have this done by Si's May payday so we can then get a cleaner. Although I don't mind laundry, I hate ironing. I get hot, achey and frustrated. Si's getting into it but he's very slow so it takes him ages to do just one shirt. If when we get a cleaner they aren't the kind that irons, I'm finding an ironing service! Si now needs to look okay at work so he likes to wear (ironed) shirts and (ironed) chinos most days. Getting someone to do the ironing so he can look good for work is definitely needed! 4. Embrace the kitchen timer. And caller i.d.The kitchen timer idea is fab....I think I'm getting one for by the phone! 5. If you can, use public transit. Now this one I don't agree with. If I were going quite a way, had someone to take me to the train station and the money to get a cab at the other end, then I'd definitely see the point. But train fares here these days can extortionate, especially when compared to an LPG car that carries 2 people, a dog and lots of luggage! And although I don't mind buses and could usually cope with the short walk to and from the bus stop, what I can't cope with is having to wait at the other end with noisy, smelly, smoking people. 6. Group "like" tasks. Do this! 7. Thumb your nose at perfection.Definitely do this! 8. Set aside weekly "prep" time. Meals, laundry, errands. I think I should do this. I already do my pill boxes Sunday night and I could do the weeks taks then too. And working out a weeks meals beforehand would beat trying to count meals as I shop in Tescos. 9. Stop volunteering for every opportunity that comes your way.I'm not perfect at this, but I've slowly learnt to get better at it. 10. Declare some ME time. I think gardening, card-making and beading count for me, but I do need to set more Simon-&-me time aside. April 04 $uck "Suck it Up"The Never That Easy blog has got a post on being told to "Suck it Up" by the people and world around us, prompted by family and the recent rash of self-help books (and Tom Cruise
And btw, the swear word in the title is only partially bleeped out b/c Live Spaces won't let me say it. April 02 Smoke free BerkshireOne symptom of both Fibromyalgia and CFS/ME that is both rarely mentioned by doctors but can be highly annoying is the hypersensitivity to everything. Noises, lights and touch all come into int, but the one that has been really bugging me lately is the smells or chemical sensitivity. Mens anti-perspirants can give me a migraine, make me vomit and make the FMS flare. Cleaning products also. But what really gets me is cigarette smoke. It's horrendous and it's dangerous to everyone so why do these people have the right to ruin a meal out or a coffee for me with their toxic habit?
Anyway, I bring this up as I found a really cool website today: Smoke Free Berkshire. It's an NHS set up website that lists venues across Berkshire that are smoke free, from Pubs and Restaurants to B&Bs. Roll on the smoking ban! March 29 Spoons & planningMy latest issue of The Garden magazine came through the door today and in it was an article on Jekka's Herb Garden. I've wanted to visit it for ages and the article prompted me to finally look at the website. I'd like to get some plants from them - both culinary herbs for the patio and medicinal and aesthetic ones for the borders. It just happens that the farm is having an open day tomorrow and it's not far from Bristol, where I need to go tomorrow for my visit with the Prof. So this seems to all be in line for me to attend the open day...but what about my Spoons?
I'm already feeling that I'm in a bit of Spoon debt from going to my parents' house to help out as my Dad is in hospital. And because my brother is not now coming to stay for a few days before going out to Italy for work, I'll be driving to Bristol on my own. Not only that but, because we're now down to one car I have to first drop Simon off at work. And I've scheduled a physio apt for straight after that in Reading (it seemed a good idea when I thought I'd have a car companion
Jekka's Herb farm is, according to Google maps, half an hour's drive away from the clinic. And there's a talk by Jekka herself at 2.30pm so if I go I might as well stay for that as well as see the farm and maybe buy some herbs (or just decide what to order online later). Say the talk lasts half an hour and I leave straight afterwards. That would mean I would get home around 4.30pm. So Archie and I would have been out (and Archie mostly sitting in the car!) for 9 1/2 hours. I'm really not sure I have the Spoons for that.
All of which sucks.
Rats. Having to count the Spoons sucks. March 19 What a shitty weekend!Friday was my apt with the Prof and my Mum was luckily coming to take me there. I say luckily b/c I had a migraine at about 4am
I think I must still be dehydrated from last Sunday when I was chucking up. Ever since then, the nausea's been hard to shake
I had one Saturday morning en route to lunch with Gran and Rob and the family...took an Imigran and it passed off.
But then Saturday night was awful
Managed to get up and do some stuff before Si went off to Reading, but then I got hit with a massive aura and just managed to get some food and fluids down before collapsing. Woke up feeling okay again but after only about a hour or two, the aura came back
When the migraine got worse yesterday evening, I called NHS Direct who were their usual useless selves, wouldn't answer my question of "if I go to hospital will they give me a drip and meds or not?" and just told me to call the out-of-hours GP as my responses did not suggest I had meningitis (if I say definite yes to light sensitivity, then they send a paramedic who will then tell me there's nothing he can do
I managed to get some sleep and woke up feeling okay (seeing a pattern here anyone?
I'm booked in to see Dr Wallis this afternoon so maybe she'll have some ideas. I have a feeling that she's going to freak at how much Imigran I've been taking...not hopeful for her rxing me the injectible or spray version. But then she doesn't like me taking codeine for headaches either and that's my only other option. I need something to help! I can't do alot with a migraine aura (try reading anything with tunnel vision and flashing lights in front of your eyes!) and I'm so tired and fed up of getting migraines night after night. February 26 I did good todaySo as I was saying I had to walk to my GP apt today as I'm without transport atm. The plan was that I was going to walk down there and then walk to the Post Office just down the street from the surgery and get a cab home. But I walked all the way back...and haven't crashed out completely since!
Yay me!!!
My GP gave me rxs for the Pramipexole and some more Codeine - we're going to wait and see how I do on the Pramipexole before trying out the Clonazepam. It was her idea, but what I wanted to do anyway. Having to watch the Spoons sucks!Raaaa! It's a nice sunny breezy day and I want to get out and plant things, but I have to walk to a doctor's apt later (as my car is out of action and we are yet to sort out an alternative) so I need to conserve spoons. What a w/e!This w/e my parents-in-law, David and Jane, and my brother-in-law, Mike, and his girlfriend, Suzy, all came round to help us do some DIY on the house - it was our Christmas present from Mike and Suzy.
I did pretty good, although I was a naughty girl and forsook my naps for more caffeine and sugar.
It was weird yesterday...Jane had a cold and felt rotten so she stayed in bed and Si had a headache so he went to bed too....so there was sick ol' me, running around making cups of tea for everyone and helping paint/do carpentry stuff while two people were sick in bed!
I must get better at this pacing lark! I was explaining to Si last night that if I ever wanted to try graded exercise as a therapy (which I don't) I would have to stop first! February 22 A Meteorologist Sailor does a Pain scaleI was talking to Si last night about how my pain was doing as it was an ouchee night and he said I sounded like a Shipping Forecast!
Here's the Beaufort Scale of the wind in the format it was orginally given to the Navy in 1832. The descriptive terms are funny in this light!
Unfortunately it does go up to 12 and a pain scale should be up to 10 (0 being no pain, 10 being the worst pain imaginable). However, I think Beaufort 8-9 could be pain scale 8 and Beaufort 10-11 could be pain scale 9.
The terminology used in the Shipping Forecast and other marine forecasts is also pretty apt....4 gusting 6...6-7, 8 around exposed headlands...steady 5... Now, the weather is obviously how irritable or not I get
|
|||||||||||||||||||||||||||||||||||||||||||||||||||
|
|