July 1st
Lets see how this month starts off, with pain. Yes quite a bit, back and hips the worst so far but that can change. When I put my foot forward it hurts my left hip and right leg. Strange, but when has RSD been anything but strange. My eye is still having its own private firework display during the day now as well not just the dusk and dark hours.
My teeth are still playing up, when I was at the dentist they were fine, typical RSD. The mouth wash seems to help.
2nd
Knees turn to play up today, a lot of spasms also some full body ones. Never mind it will give up eventually I hope or just move a round again.
3rd
Pilate's-- This went quite well considering the pain and spasms I have bean having. I did feel a bit looser later on in the day.
After Summers night time walk we both nearly got hit by a speeding car going about sixty in a thirty mile zone. I had pressed the button for green man and Summer was sat waiting. The road was clear to cross and other people did so. I have always taught summer to wait for the pips from the crossing so we waited for the signal, looked, then started to cross, from nowhere a car sped towards us going from side to side. I froze, then came to, long enough to get back to the side, just. The other people who crossed just before me had jumped as well. They stood there with the look of disbelief. They asked me if we were alright. A lot of people came to see if we were all right as well. I was very shaken. If that had bean a child or family they would have bean killed. The driver had no intention what so ever of stopping. A man passing said he had done the same thing down the road at the other crossing. The only thing I could think of, Summer and I would have gone together. I don't think she was any wiser to what had just happened. I took a while to calm down.
4th
Physio usual ear pins and needles in wrists and arms. Also something called long needling in my left shoulder to help the right shoulder, (this works like right, left brain thing) to help with stiffness and try to warm up the cold spots in my neck and shoulders. I had to turn my neck a lot to see if the stiffness had bean reduced. This caused me to have shooting head pains. Going home I felt more relaxed still head pain but a bit sad. Less pain later in the day.
5th
My left ear where the pins are is very sore and swollen. Shoulders are more relaxed but still very painful under shoulder blades.
Went with Lindsay into town to get her a pair of trainers for her birthday, Jamie-Lee had just had her nine month check at the baby clinic and passed very well. I knocked my arm on a stand and a bruise came up straight away. In a matter of a few minutes my arm was very red bleeding and swollen. I never used to be like this till I got RSD. Everything takes ages to heal and is twice as sore and painful.
Paul and I took a cheque to the Lincoln MS centre for £220.00. They helped me a lot a few years ago when I used to go in the Tank. This was money collected by the club for me to have any treatment that would help. I had used so much and the rest was divided between three Charity's. M.S being one of them.
Calvin receiving the cheque.
6th
Lindsay and family are here, a very warm day. The boys are in the paddling pool but being boys they don't stop in it, running in side and getting everywhere wet. Summer too is joining in the fun keeping cool. Jamie-Lee is crawling everywhere and investigating things that she can now reach.
Hello I am trouble now.
A good day for me as well, pain levels down and not many spasms. My arm is sore but I think the worst is over now. I think there will be another scar to add to my collection.
7th
At a car boot today I bought Jamie-Lee a little pram for her beloved little dolly. Also some fuchsias for the garden.
Lindsay and co are at the Waddington Air Show its very warm again.
Tommy-Lee thumbs up.
Jamie-Lee
Tommy-Lee and Jay-Jay. Rev it up.
Red Arrows doing what they do best.
Brothers in crime or grime?
Thoughtful Tommy-Lee.
Slow down we have all day Lindsay T.L and J.J.
Who put the top back on?
Red Arrows again.
Hello.
The boys.
A Red Arrow heart.
Lindsay and the gang.
Tracy, Lindsay's friend and the gang.
What do you mean there's no food left?
Red Arrows.
Bit big on me.
The boys again.
Great.
Ready for take off.
Jump Jay-Jay jump.
More great.
Oh no she has escaped.
Back home- The new Red Arrows suits they got.
They all had a good time but it was very hot.
8th
Not a good night burning in my feet and legs jumping most of the night I feel very drained and not my usual self what ever that is? Pain in hips and right foot RSD one. My ear still hurts from the pins (4th). At least the pain is less than winter time.
9th
My friend Bev is here today she brought strawberry's and cream very nice and some cakes. I only eat a few cakes as it plays up my IBS.
We went for a walk along Sincil Bank she was amazed at all the fishes in the river. There are very big ones at the moment. A lot of people fish along the banks.
10th
Another bad night the same burning pain as before but spasms added as well this time.
Never mind its Pilate's today in a new place. The usual place is cold and draughty, this place is very nice. My usual place is at the back with the door now open so a nice breeze. The session went quite well a lot of spasms but otherwise good.
12th
My daughters birthday today- Paul and I went to see her and gave her her presents trainers, a house phone because she lost the last one. Plus a few other things, her charms for her bracelet have not arrived yet but hopefully tomorrow when she comes here.
Lindsay
Three little monkeys in a cage.
Me and Jamie-Lee
Lindsay- Happy Birthday to you.
With the hot weather I have put a sun shade on the green house as it was 45c in there I think the tomatoes will be cooked.
With my balance improved I decided to go on a bike ride. Bit wobbly to begin with but better as I rode along. My bike is electric, you can ride it normally or peddle assisted this feels like some one is pushing you along, nice if my legs play up. Or for the complete luxury just sit there and twist the handle grip. But today I peddled about three mile in all not bad I thought considering I have not bean properly on it for about six months. I did go to the Doctors on it once. Another hot day Summer is here at last. No not you Summer dog. I know the heat affects most people but for me its good and better for the RSD most of the time.
13th
Lindsay and family are here, Tommy-Lee is at a party so I will see him later, he is at one tomorrow-as well, very popular at the moment. Jay-Jay played in the garden then Ben his friend came round. They had a good time in the garden Tommy-Lee came back so it was high decibels all round. A good day though.
Very humid and stormy, there was thunder and it went very black but that's all. Someones got a bad storm.
Lindsay charms came as well so a good day. Jamie-Lee played with dolly and her pram and a walker she can walk with them both but her legs are still a bit week. The next two pictures are a bit blurred but they tell a story. So I put them in.
Look at me I am up and walking.
Oh no down again.
Jay-Jay with Jamie-Lee.
Wow this is loads more fun.
Shock horror Lindsay had just flashed them.
No its not nice you said it was.
Summer Suey.
Summer says looking after both babies makes her tired.
Want to play?
A bad head later in the day one where you are unable even to think straight. I have bean getting a lot of nose bleeds, bad ones where I have to just lean over the toilet and let the blood drip. This can take some time. All this started when I was in Hospital March 2010. I burst a blood vessel in my nose and the blood poured out in the early hours of the morning the ENT Doctor who was on call was not impressed. He cauterised it to stop the bleeding. I have had it cauterised at least five times now, fine for a while then bleeds again. Last time I was at the hospital they told me the scar tissues is bleeding as well. No more can be done it will heal on its own in time..
15th
We are out for a meal to celebrate Lindsay Birthday. The boys are happy as there is a play park attached to the restaurant. Jamie-Lee enjoyed it making eyes at everybody. The boys went on the adventure playground, it was closed to start with so they were only on it a short time. Even though it was very warm they were running around like two mad people.
I needed that- Tommy-Lee.
Jamie-Lee with her best dolly.
A bird kept coming on to the outside tables. We asked and were told this was a Jay bird. Part of the magpie family.
16th
Another warm day warmest so far I think anyway. People have bean saying how hot it is I am still in my winter pj's. With RSD the warm or hot weather is the best most of the time.
The last few days I have bean getting a lot of numbness and pain around my shoulders. Cold as ice too. This is not a new thing but the continuous numbness is. I have not had physio since July 4th so that wont be helping. Next session is 25th. Apart from that things are pretty good.
Late evening early morning I felt very strange, dizzy bad head and balance off. YES I had taken my morphine. I think the tiredness and heat had got to me
17th
Pilate's- We are in the new hall this is a vast improvement, a bit smaller than the last one. I know I am looking forward, but this will be so warm in the winter months. I am normally at the back of the group so in this hall we are able to have the side door open (only front door on last hall so not much help with air flow) so just in line with me nice.
The session was spoilt by spasms again. I still managed to enjoy most of it.
I have bean able to reduce my GABAPENTIN down to one in the morning and two at night. I used to take six a day. These are for the nerve pain. My hope is to get off all my pain tablets but that is not easy. I have twice bean off MORPHINE only to have to restart again because of pain increase.
The withdrawal from MORPHINE is not nice or easy.
18th
Mine and Summer's walk did not go too good, my knee kept giving way with a lot of pain as well. This happened at least three times. I know most people would have just given up and gone home. With RSD this is not an option for me. RSD will take over your life if you let it. I am not going to let that happen ever.
The weather has started to get cooler again is Summer over for now? Hope not I was just warming up.
19th
Afternoon trip to Mablethorpe as it was a nice day again. Travelling was good, it's about an hour plus away so not too far. Just lately the vibrations that gave me extreme pain are not affecting me as much. On arrival we had dinner fish and chip so good. Then a walk round I needed a walk- full belly. After the shops we headed for the beach. The sea was covered in thick mist and quite cold for me I had on shorts and vest.
A quick walk was in order. Back to the car and home to Summer. Her walk later was quite a cold one compared to the last few nights. She enjoyed it better.
20th
Lindsay here with the gang. Lindsay popped next door to see Cilia and Ben. They thought Jamie-Lee was lovely. They have not seen her for quite a while before she was crawling and only two teeth, she now has four. We all went to the park the boys played football and raced up and down on their scooters. Ben was here as well from two doors away. Jamie went on a swing she tried to jump up and down (most things she has are bouncy things) and then realised that she could stand up.
Jamie-Lee.
I like this.
Ben from two doors away.
You have got to be quick to catch Jay-Jay.
Toothy Tommy-Lee.
Jay-Jay and Jamie-Lee.
Ben and a friend.
Tommy-Lee.
22nd
B12 injection- these still hurt! Went into town after for a few things after. The early cloud soon lifted and became a nice day. Shorts on again, scare a few more people. I spoke to Andrew and he said it was very warm in Amsterdam 32c. Turned very humid here later on, storms are forecast for a few days. Rained later but no storm. 29c.
In the Doctors car park there is a cherry tree. There is a sign saying-- Please do not pick the cherry's. Two magpies were sat on a branch with their beaks full of cherry's. Obviously they did not read the sign.
23rd
Bev my friend from Nottingham way is coming today, we are going on a boat trip on the local river The Brayford. Walking along Sincil bank it rained very fast and we sheltered in someones doorway. We arrived at the boat mooring but no trips today. Oh no, we decided to go for some dinner it still looked a bit grey so at least we would be dry. Panini and chips and a pint of shandy. I could hardly lift the glass. Very good it was too. By this time the sun had come out and was very warm. We walked back a different way along the river Witham. A very nice day we had too. I just wished we lived closer so we could do more things together. We have quite a lot in common.
This was not the end of the day for me. I am going for a run with one of my past running friends. I hope it goes well. I have not run this year at all. I say run its still not how I used to run. I don't think I will ever run like I used to again. I am going through a good bit at the moment so lets go for it!!
The run was very warm storm cloud thunder and lighting no rain until we had finished. Very warm and humid. Running, it felt like I had someone on my back. Quite a bit on pain in my knees and shoulders but on the whole good. We ran for thirty minutes. Enough for a first time. I felt very shaky but ok.
24th
Pilate's not bad at all I could feel my hamstring muscles pulling on certain moves. A few spasms, a good session I think.
Pain levels have bean quite good the past few weeks. Still got the shooting neck head pain. Numbness in shoulders. Knees are not good and far too many spasms. The weather has a lot to do with this also the acupuncture as well. The fight is still on RSD you will not win every time I am gaining ground. So there!!!!!.
25th
Physio
The first for three weeks- my ear pins did stay in a long time so that helped the pain well.
Today treatment went like this. Needles one in each knee near the knee cap, they hurt. Two one in each hand between thumb and first finger. Four in my neck and head. This time they all hurt. After a while of relaxing, ear pins were next, a change two in each ear. I thought the other needles hurt but these were so BAD.
Walked home after a bit of shopping. Knitting and sewing later. I am making an Action Man tent and sleeping bags for Jay-Jay and Tommy-Lee.
27th
Not feeling the best today. Headache- could be the stormy weather and very tired, completely exhausted.
Lindsay and the family are here. As the day went on I felt a bit better.
28th
I feel a lot better than I did yesterday but still not right. With not sleeping much the tiredness overwhelms me a lot of the time. My ears are still sore from the pins. Hopefully this will wear off it usually does.
Out later with Tracy and her parents for a meal. We met them yesterday for the first time. A good meal had by us all. Waddled back to the car and went home.
Spoke to Andrew he has had a bit of a fall cutting his head and eye brow. He was still able to go to work though, another plaster on his face. He still has one where his abscess was as it is still not fully healed yet.
29th
Cooler day, storms and rain in the afternoon but still quite warm. Quite a busy day, doing the bed rooms and bed changing.
30th
Happy Birthday to my son Wayne.
Walked into town today for shopping. Very warm again and humid. I went for a short run on my own about two and a bit miles. Hard going but it was very warm. My right knee hurt a bit also left hip. Took Summer for a walk when I got back. I am hoping that all the walking and running will tire me out. The more I seemed to do the less I sleep.
31st
Not really a good night awake lot with spasms and burning. Pilate's-- not good a lot of spasms I did what I could. I hope this will help loosen my muscles. I came home and took BACLOFEN I only take this if I am desperate last resort sort of thing. I went up stairs and that's the last thing I remember.
Hello all, this is Paul, Gill's husband giving my side of today's events.
On arriving home from Wetherspoons and shopping in town I as usual shouted "I'm home", no reply, I went outside, no sign of Gill and starting to get worried I shot upstairs and found Gill slumped over the computer desk. She had either passed out or was unconscious. I shouted Gill and she rose with a start. I helped her into the bedroom and into bed. Different parts of her body was spasming continuously, noticing that her hands were like cats showing their claws, with arms legs feet and neck in shapes they were not designed to be in. I went to get her a drink of water, she had a few slips but that didn't stay down for very long as her stomach muscles were also in spasms. After a while she settled a bit, (thankfully, because Gill has threaten me if I phone for an ambulance as a few days stay in hospital normally lasts for about 3 weeks because the Doctors and nurses [no disrespect intended] don't know RSD so they can't treat her as she should be treated), but still spasming she managed to go to sleep between 3-30pm and 4-00pm, she's got to be ill as normally she doesn't sleep because of the insomnia. I was checking in on her between 3 and 4 times an hour and because there's no real movement I have to check to see if her chest's rising with the breathing or she gives little grunting or snoring noises this always worries me and I don't think she realises how much I worry about her and the tears I shed when she is at her worst, I love this women. Gill slept what, I think, is well and got up at about 11-15pm, I can't remember the last time she slept/rested for 7 hours. Her body still spasming and with great difficulty she made her way downstairs, after a few hours she managed a cup of tea and a round of toast. At 3-00am Gill still suffering with lots of spasms decided that it was time for bed so it was the trek up Everest, just the stairs really but by the time she reached the top it probably felt like Everest. 3-00am an earlyish night for her and for this retired gasman 4 hours past my bedtime, hoping that in the morning Gill feels a bit better............Paul
Thank you Paul.
I know it sounds foolish to you not to phone the Ambulance but as Paul says it makes me worse. Even that time in bed a lot longer than normal made me ache and very stiff. The sleep was not a normal sleep as my body had shut down. In Hospital I would be put in a bed and given all sorts of nasty things to try to help the spasms. Most of them making me worst. I would be in bed the whole time. Not good for me as I need to tell my brain I still have a body, it may be a battered one at that but its still responding. In hospital it would take a lot longer for me to recover as Paul said. At home a few days, not easy ones though. If I don't keep fighting this RSD I will end up in a wheelchair. That alone keeps me going despite the pain and days like yesterday.
Well that's this months blog. I hope you have all had some summer weather and a few storms to clear the air. See you next month love Gill.
No comments:
Post a Comment