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July 07 GP AppointmentSo I saw my GP, Dr Wallis, today for a follow-up to my rheumy apt on Tuesday. A VERY positive appointment.
 She's referring me to the Pain Clinic that comes to the local hospital to see if they can help me before thinking about any possible in-patient treatment...it's the first I've heard of this clinic! The NHS has a new system where the patient gets to choose which hospital they go to and make the apt themselves...so I already have an apt sorted!  And although the waiting time was supposed to be 7 weeks, I've got an apt for 11 August! Yay!!! Just perfect...straight after Cowes Week so Si and I will be able to concentrate on getting me healthy and enjoying life again.In the meantime, Dr Wallis has prescribed me Tramadol (Dr Prouse's suggestion), to take instead of the codeine that's not working great for me now. She's also increased my Amitriptyline dose to 50mg (my suggestion) which may help my pain levels....and also help get me to sleep quicker.
She was a bit concerned about how often I've had to be taking my Imigran, but I think it's okay...most of my "recent" migraines have been my fault....pushing myself too hard, drinking too much caffeine, eating too much sugar etc. And once I have one, I'm far more likely to have more that week, so I can go through a box of Imigran very quickly!
We've agreed that I'll see how much the pain clinic can help me and then think about me trying to come off my meds....probably one at a time...with a view to me not needing them if and when Si and I want to start trying for a baby. But Dr Wallis said she didn't believe in forcing pregnant women to stay off their only-potentially-a-problem meds if it made them miserable ...so that's a good thing to know for the future. July 04 Rheumy apt updateWell, that was the fastest consultant apt I've ever had! Dr Prouse didn't think there was anything more he could really do for me...and as he gave me a (as your other tests are all normal) Fibro dx, BUPA wouldn't pay for anymore apts anyway. He's recommending that Dr Wallis refer me to the Pain Management course at the National Rheumatology Hospital in Bath. He's also recommending that I try Tramadol instead of codeine. And he's going to get Dr Wallis to check my Vit D levels every 6 months - which is impressive as the NHS wouldn't test me before...guess knowing someone definitely NEEDS it helps.  Rheumy apt today!I'm seeing the rheumy, Dr. Peter Prouse, for my follow-up apt this afternoon at 2.30pm. He wanted me to give the Vitamin D pills a try before seeing me again....as they've helped a bit but not hugely, I think he's going to give me a definite Fibro dx today. That will mean that I won't be able to see him again as BUPA won't cover Fibro treatment. So if that's the case, today I need to sort out meds I can try and what the plan for the future is, including maybe the in-patient rehab at the Rheumatology Hospital in Bath (http://www.rnhrd.nhs.uk/departments/pain_management/pain_management.htm).
My GP, Dr Wallis, didn't want to prescribe me anything new whilst I was under Dr Prouse's care, so I need to talk to him about more meds to control my pain....I want to try the relatively new med, Lyrica (or Pregabalin) to see if that helps and would like to know some other options for if it doesn't!
I'm really up for going to the hospital in Bath...getting some intense treatment aimed at making me more stable and able to do more would be great. Unfortunately it could be quite hard to get there with the NHS....Dr Wallis and Dr Prouse have to agree that I can't get equivalent treatment in West Berks...then they have to refer me to the hospital...the hospital will then have to apply to my local PCT for funding for me to go. It's thousands of pounds privately so that just isn't an option. When I spoke to the hospital they thought I should definitely be able to get NHS funding, but it could take some time.  It's likely to be made harder by me not being able to see Dr Prouse after a definite FMS dx. Sigh....July 02 12 Tips For Family And Friends To Boost Their UnderstandingThis was written with arthritis in mind but applies to all spoonies IMO...
May 26 Scary experienceOn Wednesday I was feeling pretty crappy and slept alot and didn't eat much. My IBS was flaring and I had diarrhoea in the morning so I took some Immodium. At about 4pm I wasn't feeling well so I sat down...within about half an hour I was stuck there. I couldn't lift my head, sit up, move my legs or move my arms at the shoulders.
 I was still like that when hubby got home an hour and a half laterwith freezing cold legs to add to the fun.  Si called the out of hours doctor and told him the problem and that I have Fibro. The doc started asking what helped the Fibro and insisted on speaking to me. I explained what meds I was on, at which point he suggested that I should ask my doc for a higher dose of Celexa!  We were calling him b/c I couldn't move and he suggested more anti-depressants!!!!  At which point I burst into tears (I was pretty scared by that point) and refused to talk to him anymore.  So Si called NHS Direct (nurse led medical advice line). The nurse insisted on speaking to me and seemed like an idiot.  She asked if I was cold and clammy and I said my legs were cold and felt clammy to me. But my upper body was hot and dry. She ended up saying I was contradicting myself and was being obstructive....basically she thought I was just lying. Her solution....to call the doc who'd suggested more anti-depressants. At which point I was nearly hysterical. Si called my Dad and got him to get his cousin to call. She's an eye doc in a family of MDs. She asked the (what turned out to be) crucial questions of what had I taken that day (Immodium and paracetamol) and what had I eaten (not alot). She suggested I get something to eat, see how I did after that and she'd consult her husband. So I felt alot calmer  ...and then we got the call saying her husband's immediate reaction was that Immodium can lower your blood pressure and blood sugar levels, particularly if you don't eat with it...and that could be what was going on! After Si had raised my legs and fed me cheese and crackers I started to feel better and within an hour and a half, was able to stand again. The sheer joy and relief of being able to MOVE! 
I still can't believe that (a) both the doc AND the nurse I spoke to didn't suss it out at all and my cousin did straightaway May 17 Toxic fatigueUgh.
The dreaded toxic fatigue hit me straight away this morning. I'd set the alarm for 8.30am and finally struggled out of bed at 10am. Nearly fell asleep with my head resting on the kitchen cupboards whilst I waited for the kettle to boil. Walked across the kitchen and completely forgot what I had gone to get by the time I reached the other side (and, no, our kitchen isn't THAT big).
Toxic fatigue is a phrase that Cath fom BYDLS came up with. It describes what most Spoonies have to deal with so much better than what the medics say....fatigue, chronic fatigue, etc. It truly is toxic. If you've ever had really bad flu, when you were so tired you couldn't lift your head from the pillow then you'll understand a bit about it. That what I deal with whenever I'm flaring or overtired. It isn't being "tired". It is feeling like all the energy has been sucked out of your body. It is wanting to curl up wherever you are and sleep...it makes the hardest floor look inviting. It can cause me to collapse completely and be unable to walk. If I try and push myself through it (like I did when I was first ill and still working in London) my body will cut in with an "emergency override" and prevent me from moving. I've dragged myself up only to collapse on the landing and be stuck there so many times now.
So my plans for the day are out. I'm feeling a teensy bit better having had some oatmeal laced with honey and caffeinated tea, but I know this high won't last long (dratted hypoglycaemia). I'm going to use this high to feed the dog and then carry the laptop to bed and set myself up with the phones around me. Wish me luck.... May 16 So tired todayI woke up tired and achey today which is never a good sign. Part of the problem with the Fibro is that it stops me from getting enough of the deep, Stage 4 sleep, in which our bodies recover physically from the exertions of the day. My meds help that, but aren't always enough. My sleep getting more messed up is another warning that I'm close to the dreaded flare territory.
I had a huge long to-do list on my PDA for today so I made myself get going this morning...even tho it was 1130 before I left the house! After driving round for ages doing chores and droppng off support group letters, I was EXHAUSTED!
 A late lunch was managed with frozen emergency food (microwaved ratatouille eaten from the container) and crackers, after which I got a coffee and crawled into bed with the laptop. Got a few things done and then went to sleep, which was how Si found me when he got home. Having slept for a few hours, I'm compos mentis now, but still feel like crawling into bed. I must be careful to conserve my spoons tomorrow as I've got a long work day on Thursday. Setting up a Support GroupOne of my jobs to do today was to contact people about the informal meet-up next week that's kicking off the West Berkshire Chronic Illness Support Group. I need to call people, but I've done letters (with enclosed flyers!) for all the people I had addresses for. I've been round hand-delivering those for people in Newbury itself today...the ones for people further out are getting posted this afternoon. And I was going to take my phone list when I go to the laundrette and do some calls there.
Starting a support group is hard work!
 I had a chat with Paula who was involved in an old support group locally that collapsed. Having a thorough constitution for the group and sticking to it is crucial for getting and keeping lottery funding. We'll need to set up a bank a/c too before we can apply for funding. Lottery funding would enable us to do so much more...get speakers even if they're paid, hire minibuses, subsidise classes, etc, etc.
Claire and I are planning to keep it relaxed at first, just coffee mornings and so on. I'm hoping we'll be able to use a room at the community hospital for free or very cheap...hiring a room in the community centre or the library is £12 an hour which will eat up money fast!
I guess once we start it would make sense to have a small subscription to put some pennies into the bank a/c...even if it just pays for tea and biscuits! Maybe £3 a year???? May 13 Fibro + DIY = PainFor much of the day today, I've been trying to sort out the pipework for the new bath taps. The old stuff was impossible to get off in perfect condtion, plus I wanted to add taps on the pipes so we don't have to drain the whole water system to work on the taps...hence all the pipework needed redoing. The pipes are proving difficult...everytime I think I'm getting there another leak starts.
Working under the end of the bath isn't exactly comfortable and using wrenches is tough on my hands. The result is pain and stiffness...lots of it. My neck has stiffens up and aches even if I don't move it. Moving it causes prickling and stabbing pains in the back of my neck. My back is stiff and I can't straighten it. My hips hurt. I ache over most of my body and I'm knackered,
May 12 World Fibromyalgia Awareness DayToday, Friday May 12th, is World Fibromyalgia Awareness Day.
What is fibromyalgia? While fibromyalgia is one of the most common diseases affecting the muscles, its cause is currently unknown. The painful tissues involved are not accompanied by tissue inflammation. Therefore, despite potentially disabling body pain, patients with fibromyalgia do not develop body damage or deformity. Fibromyalgia also does not cause damage to internal body organs. FearI've been overdoing it lately. Gardening at the weekend, then DIY this week and work yesterday and today. Wednesday night I had to stop working on the stupid plumbing and go to bed early because my hands were shaking from exhaustion. Yesterday I had a long day at work and came home completely exhausted, achey and weak. This morning, when the dog woke me up for his early pee outing, I could hardly stand up and when I bent down to wipe his paws, it took a few minutes before I could straighten up. I feel like I had hardly any sleep and I ache all over despite the fact I'm normally NOT hurting at this time of day.
This is not good. I'm terrified of going into a major flare. Or even worse, a flare that becomes a another permanent downward step.
Last summer I took a major downward turn and basically went from being able to work full-time to not being able to. All because I pushed through a flare and did too much. And the main contributing factor to that was all the extra work Si was doing on software for my dad's company. And then all the stuff around Cowes week.
And guess what? He's doing more this year! And despite all the plans to get it finished early, he's running way behind. So I can't get help with DIY, chores, doing stuff for the dog or even much help with just looking after me.
And he's doing the work partly because we need the money after me being completely out of work for six months with no benefits. We're also supposed to be having a paying language student coming to stay from June to help the finances. But for that to happen, all the DIY in the bathroom and kitchen needs to be finished. And we can't afford to pay anyone to do work. So it's down to me.
I'm scared. I don't want to be sicker.May 10 The waiting gameI was supposed to have an appointment with the rheumy yesterday, but his secretary phoned up and said he thought I might as well wait in order to give the vitamin D a chance. All my other test results were normal. So my appointment has been delayed two months.
I do like seeing docs on the BUPA!
They have nice staff and are pretty good themselves. Dr Prouse's secretary said that if I flared badly between now and the appointment then I should call and come in sooner. It's so nice to know that there is a doctor there that cares about my state of health! It's the first time anyone's really cared about whether I was flaring or not.Having talked to the people on BYDLS, I am a bit concerned that the vitamin D regimen isn't high enough doses. Most people in the States and Oz that have been treated for the vitamin D deficiency were given injection or IV doses of many thousands of units of vitamin D as well as the daily doses. I'm only on 400ui a day. April 24 Physio apt todayI had another session of acupuncture today which was great. It really helped my pain, especially in my lower back. Today I did have some tingling in my arm afterwards but when my right hand started to hurt also, I put my TENS machine on and that sorted the tingling as wella s the pain.
I now have an exercise program from Liberty (the lovely physio I've been seeing at the West Berks Community Hospital) to strengthen my muscles and improve my core stability. He's suggested I try adding in the exercises he originally gave me and also a few very simple ones to be done on an exercise ball. Si was accordingly sent out this evening to buy me an exercise ball...and he then kindly pumped it up for me! Currently the ball stinks of new plastic (which makes me feel ill) so it might have to stay outside for a few days!
I'm feeling pretty positive about all this. If I carefully add in these exercises and keep on going swimming, walking and doing some yoga, then my fitness should improve which would help and hopefully I'll also lose weight! The exercise ball exercises are really easy so I should be able to do them alot without risking overdoing it and I think I'll try adding one strengthening exercise in at a time. Hopefully then I'll be okay.
West Berkshire Chronic Illness Support GroupThe West Berkshire Chronic Illness Support Group is coming into being! I'm really excited about this and feel it could be a great success.
Claire and I today decided on a date for an informal meet-up to kick off the support group...Monday May 15th! We're letting people know that the two of us will be in Caffe Nero in town from 2-5pm on that day, for people to drop in, chat about the support group and meet other potential members. I've designed some questionaires for people to fill in, so that we can get all their contact details and gauge their response as to convenient days, times and locations for future meetings, as well as what they would like from the group.
We're contacting all the people on our various contact lists...from the Living Well course I attended that Claire tutored at, the Living Well Course Claire went on and all the people that have contacted me in my role as FMAUK helpline. I've also designed some posters for the group that we can put up in key locations...the physio department at the hospital, doctors surgeries, health food stores, etc. I've kept the posters general (i.e. not mentioning the coming meeting) so they can stay in place.
Claire and I have so many ideas for this group, from people to give talks to dance therapy classes. Once Si has some free time, I'm also going to get him to help me set-up a website for the group. It should be great! And with both Claire and I working at it and with all our joint contacts, it will (hopefully) kick off well!
 April 13 NormalityIn lives that have been through more in a few years than some people go through in a lifetime, normality is embraced, sought after, wished for.
Today I went o work and then got a new haircut. It looks cute and grown up and makes me feel attractive. Finally working again makes me feel independent and sociable. I celebrated by taking the evening off from DIY or chores, reading a good book, drinking some nice wine and watching some tv with my husband. A boring evening by the standards of many 25-year olds but heaven to me.
To normality! April 12 ContinuingI didn't choose to become sick and I certainly didn't want to. I've had to see my life turned upside-down, my ambitions crushed, my hobbies spoilt. In 2001 I was a healthy 20-year old...sporty, in the university sailing club and a member of the slalom ski race team...with the next ten years of my life mapped out and my ambitions clear. I was going to race yachts around the world, push my body to it's limits and endure, be a famous sportswoman, travel and have an exciting life, full of adventure and glamour. Now all that is gone.
I have lost the person I once was. She is gone, dead, never to be seen again. Only remembered, fondly and painfully, through the blurring of time.
Sometimes continuing to live with MY life and MY self gone seems like an impossible task... and an unwanted one. Continuing is a challenge that never ends. Everytime I get out of bed it is an achievement. A day without regret a massive one. I have trained myself to not think, to not dwell for if I am to continue then crying and hiding seems a waste, but if I do think then I cannot help it. I am fighting every single day just to keep going.
But this is an achievement understood by few and recognised by none. April 11 Support Group BrainstormingMy friend Claire and I are thinking of starting up a local support group for people with all sorts of chronic illnesses. We want a way for people to get together, meet new people, get out of the house and exchange support and advice. As the symptoms of so many chronic illnesses overlap, it makes sense to have a support group that is all inclusive...very much like a real-life version of butyoudontlooksick.com!
So I've been thinking about what to do today. I went to the library and enquired about a meeting room there. Their meeting room is available to hire to non-profit making organisations, but at a charge of £12 an hour! Which isn't ideal, but the location....central, right next to a big car park and with everything near by....is! Plus the library's meeting room is alot nicer than for example, the hall at the Baptist Church. I was thinking that maybe if we had the first meeting at the library we could have future ones in different places, maybe even peoples' homes, once people are more sure about things.
It would make sense for us to start up a bank account for the group and if we did, maybe Claire and I could lend a little money to the group to get us started. Hopefully we'll get quite a bit of interest and if everyone paid a small subscription fee then that would be something. And then we could also apply for funding.
So far I'm thinking that having an informal drop-in coffee morning would be the best way to start. People with chronic illnesses often seem to like informal events with no set starting time best. |
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