Have now got a cold and sore throat ache all over very hot then cold still have not been on bike

14 Dec
Virus now seams to be on way out. have bean told I now have eczema on my hands. Lots of pain this week, right hand dropping things.

Christmas day

A painful day took extra tabs. Another year comes to an end, a very mixed one what will next year bring?

Mid November 2007

Had a fair week , shoulder seams to have settled down, foot still has its moments .I have still got virus, difflam only numbed the area, see how it goes or its back to docs next week.

I was not able to go in tank again this week, because of virus Paul said he would not let me in so I stopped for a while then got a lift home it was nice to see some of the others users of the centre.

Been back to doc have now got a sinus infection given antibiotics feel quite bad antibiotics made me sick try again says doc while eating food, ok this time hope they work.

Very achy, today bad throat and head.Finished antibiotics don’t really feel that much better.

Electric Bike arrival

The pain has gone down a bit now, but still is bad but not as bad as August /September have now started to take normal amount of tablets plus bio freeze and ibru gell.Maybe I will have a few good days?

Still have virus thing can now smell ammonia, given a mouth wash to gargle with Difflam Oral Rinse, see if it works, chest is clear but a lot of pain in face and forehead.

Have now been on my bike for a short ride as still not feeling too good, its very fast and smooth, the bike can be peddled as a normal bike, electric assisted, or electric only you just seat back, and let the bike do all the work, great when foot really plays up, the bike will do about 30 + miles on 1 charge with out peddling a lot more if you peddle.

When flat just plug in 3to4 hours and; off you go again.Obviously if you run out of power you can peddle,[ not like my scooter] which is a lot better as you are never stranded. Hopefully I will enjoy it.

October 2007

Picked up some sort of virus,bad head sore dry throat RSD really playing up.Asked wietse today if this could be the start of RSD spreading he said maybe, there is so much going on in my body it is hard to tell

Have not been in tank for 3 weeks but I am hopping this week all will be well [because of virus].

Got my bike today so far have not bean on it but will any day Lincoln watch out.

Pain levels have bean all over the place this last 2 months and  I started to get a lot more cold spots in my foot parts are ice cold to the point of being painful and parts are hot or warm it is very strange; I have had very cold foot before but never so many combinations at the same time. Wietse say this is quite normal have yet to find any thing to shock him yet about RSD.

Got an electric under blanket today as I get very cold when in bed, you can leave it on all night if you choose to so far have only used it to warm the bed I have a bed cradle on the bed to stop the quilt from touching my foot as it can cause executing pain so the lower half is not as warmly covered.

Results back from carpel tunnel test shows that the carpel nerve is not trapped or squeezed;so not quite as bad as first thought carry on the same with splints no crutches.Getting about slow & painful without crutches also left hip hurts a lot.

More tests...

Nerve test today, to see, if it is, Carpel tunnel, very painful as already, in a lot of pain in shoulders and back. The test involves placing pad and sends an electric charge through to see how the nerves react.By the time the test was finished I was in so much agony.

I went to A/E, they said it was the RSD playing up and took an x-ray of my chest and said there is nothing they can do, go home to rest I got a taxi home and  collapsed on the settee.

The pain did not improve, started taking extra- extra morphine and  gabapentin + ibuprofen & extra oromorph, very high but pain still there.

See wietse to day worked on my neck very painful he said go home to rest flat on your back .Don’t take any extra tablets.Hardly able to move the next day in such a lot pain, now foot has joined in. Pain, off the scale, GET ME A GUN

.Cancelled tank this week. Unable to sleep because of pain [not that I get much anyway]

Saw wietse again, worked on shoulder and back did acue and reckie .relaxed me so much almost asleep. he told me to stop using crutches as it is making back and shoulders worse .I said I wont be able to get very far with out them, he said good, you will have to rest.
Taxi home to rest
DR again upped pain tablets also to try ibuprofen gell he said could be RSD moved to shoulder and spreading or fibromianlga

Wietse away today massage by Michelle different physio she said shoulder very tight swollen.Told me, about bio freeze, a gel, which freezes the area it Worked!!!!Taxi, home to rest.Bio freeze works very well if only for a little while so does ibuprofen gell

Went back in tank today, not too bad pain and pressure in ears.Pain a lot better in back/shoulders than a few days a go.

Great Yarmouth

A few days at great Yarmouth this week, forgot crutches had to borrow some from Red Cross.The weather was very good I had quite a good week apart from the bad pain in back /shoulders and wrists not to mention foot. But never mind, the sun is shining.


Did another walk to day, on crutches, nearly 4 miles Branston Dash one of Lincoln and District Races. Raining, damp; very wet, under foot. I enjoyed this a lot it felt good to be part of something again.
Colin went round with me so I did not get lost.
Thank you Colin

The pain has bean bad this week with foot burning and spasms foot  jumping and  a lot  pain in back, hips and  wrists.
Wietse thinks pain is a mixture of every thing together, slow down a bit.

Electric bike research - Cambridge

Went to Cambridge today to look at electric trike to use instead of mobility scooter or along side it, seams quite good have to measure up for door sizes as trike is very big.Trike is too big to fit trough doors back to square 1.

Hospital Bone Scans

Hospital to day, Wednesday, for bone scans as I have had a lot of pain in hips and  joints to check for osteoporosis but I don’t think I have it, results back in 2-3 weeks.

DR appointment, to check tablets and any thing else.I was told the results of test were back [it came back Friday, 2 days after test.] The news was not good I had osteoporosis quite bad that’s why the results came back so fast I was devastated what more can this RSD do????? More tablets.

Race for Life

Race for life I am doing this today on my crutches it is raining and very cold the race was delayed because of traffic
.Lots of support as Lincoln and  District are marshaling.Managed to get round 18 minutes less than last year properly because of my oldest grandson [3] shouting so loud by the time I had finished everybody knew I was his nanny .
I enjoyed it very much. I ached quite a lot the next day but it was worth it.

I am diving to a depth of 33feet now apart from a head and still, ear trouble it feels pretty much the same as 24 feet Hattie, you, mostly does my dives takes it down very slow 15Min's + to reach level.
Thank you Hattie

.Got splints, to day, to wear at night, to help wrist pain. Saw DR Armed [DR at hospital] she said my foot looked good but when touched went into a very bad spasm which was very painful the pain lasted for about 2 days.

Continuing with physio Wietse said I am trying to run before I can walk slow down a bit .I reminded him it has now bean 3 years since I fell.

The pain varies day to day on a good day the pain will be 3-5 on a bad day 8-10.This last week, I have had a lot of pain in foot and hands.Also, a build up of pressure, in ears, when in tank. Cold, stormy, heavy, hot weather play in big part in the way my foot feels
.All vibrations/ noise make it worse.

Tank twice a week

Tank now twice a week in stead of every day so a lot better .Depth now 33feet the deepest I will go in my treatment my ears felt like they would burst could not release the pressure for a long time when finely released went off like a fire work Hattie stopped the dive for a few minutes till I felt better then started again, not a good dive.

Lincoln and District Support

Lincoln and District have offered to pay for any treatment by giving me the money raised for RSD research, last year by doing Dane law way run which I all so took part in, as I can do the research first hand and also hopefully help others with RSD.Thank you, Lincoln and District.

The days are taken up with dives and physio sessions some days are a lot better than others but most days you have a lot of pain loss of feeling cold/hot foot tiredness loneliness not being able to talk to any body the same as you.The MS centre is very helpful but most of them have MS.

Today I have bean told I most properly have carpel tunnel in both wrists as they are so painful.[caused by over use of crutches].Foot also is playing up. Give me a break please

.Had a weird thing happen early hours of morning fell asleep for a few minutes then woke unable to move, it was very scary.The doctor said it is called Todd’s paralysis it can happen sometimes if it does it again; get in touch with him and not to worry about it. OK

.The dives are still most days some are better than others still problems with ears and cold foot about the same as before more spasms also mouth and nose ulcers not very nice.

Fall and Lincoln 10k

Foot gave way and I fell over in bathroom grazing my head and knee big bump on head bruised round my eye, got a wedding today as well.

Sunday - Went to watch the Lincoln 10km race today mixed feeling but it was a good day, overdid the walking, foot very sore and swollen pins and needles, better rest before Wietse sees it or I will get a telling off for doing too much.

Next level in tank

Went to next level in tank took a lot longer to reach depth other wise pretty much the sameWhen I go into the tank if Paul is the operator he wraps me up like a turkey as I get so cold this helps a lot otherwise if not Paul I wrap my self up.
Some people sleep like a baby after the dive I wish it affected me like that as I have trouble sleeping most nights only getting 4to 5 hours in bed and that disturbed sleep, maybe things will get better?

My physio Wietse thinks the dives are helping the RSD as foot does not look as bad, a lot of the time my foot is warm.To day dive was very cold it took me an hour to get warm I felt sick and shaky.

HBO Treatment

I was greeted by Maureen and shown the tank, it is a diving bell the same as divers use under the sea complete with portholes which the operator looks through to check up on you, all so there is a 2 way intercom system should you need to talk to them, or them to you, also a radio through head phones which you can put on or leave hanging on the wall. I sat down, in the tank, a mask was put on me and I was explained about the dive [as it called]
The door was shut, like a cell door. The noise was very loud like a engine, the pressure began to build up my ears were going crazy and in a lot of pain much worse than a plane I kept holding my nose and blowing this helped a bit. The depth to day would be 16 foot [The dives stop at this for a few weeks, till the body climates then will go to the next depth this part is called saturation and goes on for a month or in my case a lot longer, every day Monday-Friday]
The tank reached depth the noise stopped, you sit there for one hour with the mask on, breathing oxygen then you are told time & are brought back to level. The noise is the same going back up but it gets so VERY COLD. I have lots of blankets.My ears popped liked mad.Maureen asked how I got on I said it was different she said see you to morrow.

I sat and had a cup of tea made by Dawn who works mainly in the kitchen but all so, drives and is a tank operator. I all met a few others, Paul chairman of MS and Hattie a tank operatorand few people you have treatment there.Back, to morrow for another dive. After a few dives my feet felt warm for the first time in ages could this be doing some good?

The dives continued but are very tiring the only day of the week I did not go is when I went to physio on a Tuesday. Two weeks later I collapsed after being in the tank and was taken to hospital kept in for the day and was told I was exhausted and told to rest the tanks came to a holt for now after a week off I went back to try again.

The same, as before, every day.The tank still made my ears hurt and a lot of the time gave me a head ache but I felt the advantages out weighed the disadvantages [warm feet and well being] I continued with the tank still having problems with ears & head [doctor said because this properly happens because of ear drum problems and or congestion]
.Maureen suggested trying the ear phones on my ears going up and down in the dive as to mask the noise a bit as it bothers my RSD it helped a fair bit.

Physio carried on mostly with accuepunchre and massage.My foot went through days of pain different colours and sizes the pain being controlled or some of it by morphine and other tablets.

2007 New Year

I was told I could start HBO treatment so I got in touch with the MS therapy unit and will start treatment on Feb 8th.

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