JULY-RSD FIGHTS BACK

July 2nd

Today Summer has bean for her trim and bath. She looks so sweet.

So clean.

The common is very bad at the moment, wet and muddy. She will not stop clean long.

I feel like I am getting a cold very heavy eyes, sore throat and a head ache. Wayne phoned me up earlier and said he had man flu. Maybe I caught it off him!!

3rd

Yes I have a cold. I feel hot and cold not the normal hot and cold I usually have. Runny nose runny eyes but not runny feet. I had my B12 injection done today as well. This hurt quite a lot. Still spasms most places. The cold does not help either.
Some pictures I took of the swans and there young. They come back every year to Sincil Drain.
The babies having a ride

4th

Pilates was a bit better than last few weeks. Spasms when reaching up and back but on the whole better. Cold not good but could be worse.

Over the last few days I have bean keeping my eyes on a nest that the moor hens have built, its not near the edge of the bank so at risk from the high water levels from all the rain we are having. Today its surrounded by water. The moor hens are back and forward getting twigs to rise the nest

The water getting higher.

Sorted out the greenhouse tided up the tomatoes plants and watered them. They are doing good maybe I will get some tomatoes after all.

When I took Summer for her night time walk the water in the river had risen a lot more. The nest had gone . The poor little moor hens were sat on the bank. I think the nest had bean washed away. I like to think they had hatched but that's very unlikely. What a shame.

6th

Not a good night spasms in arms and legs very pain full ones. The sort that don't really go but lurk in the background ready to pounce again and again. I have finished the rabbit I was making for the baby Lauren pictured in last months blog.
Same as this but with black bow instead

Later on in the night the spasms went crazy lots of pain. They just about settled, then a bad nose bleed. Usually when bad I just let it drip over the toilet till it stops. Leaning over brought back the spasms, full body is there no end to this? Bed 5.30.

8th

Went out for tea at a local pub, Nosey Parker's - very nice it was too. Even better because I did not have to make it or wash up. I had trouble cutting up my food because every time I pressed down my arm went in to spasms again. Cold a bit better but a lot of catarrh and still my head aches, but that could be down to the weather as its very stormy here. Talking about storms, I have noticed when the air is very heavy and humid I suffer a lot more with pain. Does this affect any one else?

10th

Pain go away I have had enough. A nice walk on the common I usually walk on my own but today one of my friends walked with me. I usually meet her coming off the common or going on as I am doing the opposite so it was a nice. Took my mind off the pain for a while.

12th

My daughters Birthday- Happy Birthday Lindsay. Going to pick up a cot we have bought for her baby arriving in October. I hope my body will cope with the journey as it about an hour away.
Not too much pain less would have bean better though.The couple made us a cup of tea I thought that was so nice. The cot was perfect . We went for a Subway lunch very good. The journey home was also not too bad for pain.
Later we joined Lindsay, the boys and a few of Lindsay's friends for a Birthday meal. Very good as well.
Me, Lindsay, Paul, Tommy-Lee and Jay-Jay.Lindsay in her hat, a present from one of her friends,


Later on a lot of pain, and yes, yet more spasms. I am hoping to get to see Dr Metta tomorrow. He has bean on Holiday so I have waited till he was back. I could see one of the other Doctors but they know nothing about RSD. At least Dr Metta has learnt a little.

13th

Eight years today since I fell, and all this RSD was fired up. Eight years of hell. Andrew says at least the RSD has not won every time. True and its not going to either even though a lot of time it feels like it. Had a phone call with Doctor Metta. He asked me to come into the surgery to discuss tablet change. I told him I had stopped BACLOFEN and have bean just about overdosing on the rest of the tablets to get a little bit of pain relief. He was quite surprised how many I had taken. He asked me what I wanted him to do ? I said shoot me, he said are things that bad I said yes. I explained about all the spasms and pain

We/he decided was to try this: double the MORPHINE to 20mg, straight away. Double the GABAPENTIN from 600-900mg a day (2-3 tablets) to 1800mg a day (6 tablets).To build up over a few days. Also DIAZEPAM was added 2mg a day building up to 6 mg max a day . We both did not really want this but Doctor Metta is running out of options. This hopefully will help the muscles release the spasms and some of the pain I am getting.

My B 12 is to be done every two months instead of every three to help boost my blood a bit. I am still not taking the full dose of IRON yet either as it up sets my stomach. He said my body is on the edge of braking up and heading for Hospital again that would not help one bit. I hope this change will help me. As the last few weeks have bean crap. I took the DIAZEPAM at night I thought it would cause less trouble that way. No difference to a normal night (my normal).

14th

I have taken an extra GABAPENTIN morning time. I don't think this will have much effect on me as I have taken higher doses be for. I feel very light headed spasms the same but its not a miracle cure (if only). Wayne my oldest son is here for the weekend. He has brought my laptop I just bought of Will. Wayne forgot the lead but we were able to borrow one so all was well in the end. I can now do my blog on it instead of the main computer up stairs. Which is what I am writing on now. Wayne has put in a new hard drive and put extra things on it. I am very pleased with it so far.

16th

I am now taking two DIAZEPAM now, one morning one at night. I feel like a zombie. Spasms still the same. Hopefully the side affects will wear off soon and start to work . GABAPENTIN an extra one at night. A good day with Wayne though.

17th

A bad head, balance bad, far away feeling zombie like. Spasms still pretty much the same.

19th

Out for the day at Bev's, Russ's Mum.. Took the rabbit I made for Lauren so Bev can give it to her next time she sees her. I feel in a lot of pain just about everywhere. Taken a lot of OROMORH this helps but make me feel a bit, or should I say a lot, spaced out. We had a look around the shops at Beeston very unsteady on my feet. She was a little concerned about me going back on the train on my own.

Still a good day though. Traveling by train is better than car, less vibrations. Did not get home till about 7.30pm. Paul picked me up from the station. A long but enjoyable day even though I was not at my best..


20th

Out to day at Gainsborough picking up some eBay buys. A very bad head very not with it at all.

I am sure its the DIAZEPAM that is causing all the extra weird things.

22nd

We have a big yellow thing in the sky, its the sun, come back again. A very warm day. Summer!!
Quite a busy day watered the green house tied up the tomatoes. Washing as well dried lovely. Also cleaned up stairs.

Eyes very heavy still bad head. Stopping the night time one to see if I feel better.
Fell asleep about 5.30am. Paul came down about 6.30. I did not bother to go to bed at all. After all I had about an hour and felt OK.

23rd

Still bad head and far away feeling all most like hang over affect. So I have bean told anyway, I have never really drunk that much.

25th

Pilates in the Morning a car boot in the afternoon. I still feel a bit rough but I always have felt better out side than in. Try to keep going to block out the pain.

A lady brushed past me with some trellis catching my arm as she did. Anyone normal (without RSD) it would not have bothered them. A RSD suffer like me it did big time. Making me cry with pain there was only a graze but the RSD saw its chance and went for it big time with pain and burning then spasms.

My left foot is swollen I think its inflamed veins again. Quite painful. I think my body is at war with me. Late PM still strange feeling.

26th

Had by Haircut by Helen. She is going to get married in Merishus very soon. Hope things go well Helen and Chris.

Arm very sore, foot swollen as well.

Physio at last only a review but its a start. A very nice man asked lots of questions. Forgotten his name though. Does not know a lot about RSD. I had a very good massage by him and felt a lot looser in my neck and shoulders. He said they were very tight and tender. I said I know only too well.

He is getting me some ACUPUNCTURE starting August the 20th with a man called Nav. This what I need, not more tablets with yet more side affects. I was disappointed with my self I had to increase the tablets but I have to have a life.


28th

Two extra people here for the weekend, Russ and Wayne. Russ is here for one night, Wayne two. Lindsay and the boys plus Suey dog are here for the day as well. Full house today.

My foot is very swollen and bleeding from the vein. Arm also very sore. Neck and shoulders feel at bit looser. I know it won't last though but its nice while it does. I have made two Birthday cakes one for Lindsay, a late one since not bean feeling well and one for Wayne on Monday.

29th

Not a good day a lot of Pain. My head feels like its going to explode. Balance not good. Cooked a roast dinner Russ helped me. Very good it was too. Good having Russ here. I have decided to stop DIAZEPAM all together too many side affects. I think the tablets I take don't get on with them or they don't get on with me. The only way the spasms are going to go is when I get the ACUPUNCTURE. Or at least I hope so.

30th
Wayne's Birthday. 33 today. We are all going out for a family Birthday meal at Nosey Parker's.
Wayne.

After we had all had a good meal Jay-Jay and Tommy-Lee went into the park to play.
Tommy-Lee
Jay-Jay
Having fun.

31st
Doctors again, just lately I have going to see him a lot. I told him about the DIAZEPAM and the side effects I am getting. Maybe the other tablets I take react with them he said . Showed him my arm which I thought might be infected. He said it was the fluid coming out the graze. This happened because I had gone down so many skin layers. Anyone else this probably would not have happened and healed by now but because of the RSD it has not. I am to keep it covered up with dressings to help it heal and stop hopefully any infection starting. My foot, as I thought is inflamed veins again. With it bleeding, made the swelling go down. I have bean given cream for this. HIRUDOID.

As you can see not much better month. I hope when the ACUPUNCTURE starts, things will change for the better. After all I did not have this much pain and spasms, for so long when I was with Wietse. I just hope I am not banking on this too much.

I try to keep going but some times, no a lot of the time its hard. I keep thinking about what I was told early on when I first got RSD by my first physio Sue. USE IT OR LOOSE IT.

Well bye for now. Keep moving.
Love Gill.

Leaving comments...

Some people I am told are having trouble leaving a comment.This should help.

Click on to comment next to envelope, at bottom of each posting, write comment, copy Text in box the same as shown, choose ID, click on anonymous, see preview, publish.

You can always leave your name in the comment if you wish.