As regular readers will know I have started physio therapy and have had two sessions in the last month. I know that I am not going to have miraculous results in just this short time but at the moment I am wondering if its worth continuing at all.
I have had good results on the hip stability front they no longer feel like at the slightest opportunity they will slide out of joint. That's an excellent result, however my muscles are fatiguing so quickly that I am lucky if I can do more than 3 repetitions before my muscles start jerking all over the place. I have been doing the exercises at least twice a day sometimes three times a day but my muscles are not getting any stronger. They are showing signs of muscle fatigue that is common in the diagnosis of myasthenia gravis. Bev advised me that once the movement goes from smooth and controlled to jerky that I am no longer using the correct muscles and have stopped being effective. Imagine my frustration that after three weeks I am no further on than I was in the beginning.
At my last visit I was asked to do some extra stomach muscle exercises. These hurt but I can cope with muscular pain after completing them. I would expect sore muscular aches and pain as my body is so out of condition. What I didn't expect was that the stomach exercises would irritate my bowel adhesions leaving me in incredible amounts of pain underneath an abdominal scar. The pain has become so intense that its now once again hurting when I eat as my intestines are caught up in a web of scar tissue. I am now doing the exercises every three days so that I can keep the pain at a level I can deal with.
I will be honest I have been a bit lazy with my neck exercises as I noticed when completing them I was ending up with more headaches and migraines. I spoke to Bev about this at the last visit and she said it could be the muscles getting tense or going into spasm. Unhappy with this explanation I stopped doing the exercises and the headaches have disappeared. Unfortunately it coincides with when my dose of steroids was altered so I don't know what has caused the headaches to stop. I have now started the neck exercises again to see what happens.
I was also supposed to be increasing the amount I walk by 10% a week, I just can't do it. Any increase of walking means more back pain and hip pain. My hip pain feels like the two bones are grinding together the back pain means my spine locks up and I further reduce my mobility.
At the moment I am seriously considering ending the physio as its causing me more pain and other problems. I will give it a bit longer before I make my decision. I knew physio would cause me muscle aches and pains due to the state I am in. I wasn't prepared for the whole host of other issues that have come along.
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Friday, 29 July 2011
Thursday, 28 July 2011
Crazy Times!
Sorry yet again I have been MIA for a week, I've actually been a bit of a social butterfly. In the last ten days I have seen more people than I probably have in most months. Its been lovely but I have to say I am totally exhausted!
Last week I had physio on Monday and as you know from my previous posts it was disappointing. Bev wanted me to introduce some stomach muscle exercises. I have tried to include them but unfortunately they cause me a great deal of pain as the irritate my bowel adhesions. Something neither Bev or I expected so Ive had to forget doing those as despite being on morphine any movement after these exercises causes me quite a bit of pain and then makes eating very uncomfortable.
I also can't do one of the other exercises as it upsets my back sometimes it feels like I make one step forward only to take two steps back.
I am now taking florinef on alternating doses and it seems to have reduced the headaches I was getting. I now take 200 micro grams on one day and 100 on the next the headaches have gone (fingers crossed). So that's a great leap forward as the headaches were very incapacitating.
I am completely exhausted I am just waiting for hubs to get back from taking Mollie to the vets. As she is on medication for her spay induced incontinence she has to have 6 monthly check ups. All hell will break loose when she gets back as the other two will get a bit snappy when she returns! They are quite funny in the fact that they get really peeved if one of them goes out and they get left behind. Hubs is going home via the pet shop to get some treats to hopefully ease the tension when Mollie returns.
On Friday our friends J and K came up and visited us for a few hours. Mollie went crazy J and K bred Mollie and they were on the verge of keeping her as the owner backed out due to a change of personal circumstances. Shes Travis' sister (different litter) its lovely that we have her as it our link to Travis after his death at the age of 2 years 11 months. Mollie stayed with them until she was 12 weeks old an important time in a puppies life and she goes absolutely crazy when they visit. When I was well we used to visit J and K quite regularly with Travis and Mollie so she has never ever forgotten them. She absolutely adores them and its lovely to see.
Later that day Amanda came over and spent an hour or so with us. It was great to see her as I hadn't had my Amanda fix for well over a week! Saturday I went and spent the day with my parents at their caravan. A change of four walls was certainly needed! It was a beautiful day and I spent most of it outside in the sunshine lying on a sun lounger. To be honest I stayed too long and ended up getting over tired but I don't mind spending spoons on an activity like this.
Sunday I woke up in horrific pain I had been messing about with my mum showing her some party tricks! Mum still thinks she doesn't have EDS but how many 55 year olds do you know that in a seated position can raise one foot up past their waist? I had to go one better and had one foot on my shoulder and then tried to get my foot behind my head ..... which worked! It didn't hurt at the time but Sunday morning my body was letting me know it really wasn't happy!
Our friend A came over on Sunday as a surprise bearing a caramelised orange cake. I never turn away visit that involves cake (evil chuckle!). A stayed a few hours and it was great to see him as well. Monday was my day of rest and believe me I needed it. I slept for the majority of the day and still was tired!
Tuesday Ellie and Mr G came over for dinner. Imagine an episode of come dine with me! I'm just glad we haven't poisoned them! We made a chicken madras and a vegetable madras for me as I am vegetarian. It was a brilliant evening as Ellie and Mr G brought over a blue ray DVD of aha in concert. In my youth I was a massive aha fan and it was scary that despite not having played any of their stuff for years I knew all the words. My relationship with aha went sour when their lead singer announced he was getting married! I remember crying into my weetabix before school on hearing the news announced on Radio One! I was besotted with Morten and I couldn't believe he had betrayed me in this way. Oh the follies of youth!
Yesterday I spent a fantastic day with Amanda, shes got a brand new car so she took me for a spin! We went down to the sea front and had an ice cream. It was a beautiful day and we could see for miles. I couldn't believe how busy the beach / seafront was. Its odd how far removed I feel from normal everyday life as we drove around the town so much had changed it was like I had moved and just hadn't noticed. Very bizarre!
Today will be a recovery day for me and probably Friday as well. Before I go I have to share this photo with you.
This is Frankie, Willow and Mollie all taking over the sofa! Its so rare that all three are together in one place at one time! I sent this photo out by text message to a few friends with the message "so where are you gonna sit!"
Spoilt rotten! Thanks for reading xx
Last week I had physio on Monday and as you know from my previous posts it was disappointing. Bev wanted me to introduce some stomach muscle exercises. I have tried to include them but unfortunately they cause me a great deal of pain as the irritate my bowel adhesions. Something neither Bev or I expected so Ive had to forget doing those as despite being on morphine any movement after these exercises causes me quite a bit of pain and then makes eating very uncomfortable.
I also can't do one of the other exercises as it upsets my back sometimes it feels like I make one step forward only to take two steps back.
I am now taking florinef on alternating doses and it seems to have reduced the headaches I was getting. I now take 200 micro grams on one day and 100 on the next the headaches have gone (fingers crossed). So that's a great leap forward as the headaches were very incapacitating.
I am completely exhausted I am just waiting for hubs to get back from taking Mollie to the vets. As she is on medication for her spay induced incontinence she has to have 6 monthly check ups. All hell will break loose when she gets back as the other two will get a bit snappy when she returns! They are quite funny in the fact that they get really peeved if one of them goes out and they get left behind. Hubs is going home via the pet shop to get some treats to hopefully ease the tension when Mollie returns.
On Friday our friends J and K came up and visited us for a few hours. Mollie went crazy J and K bred Mollie and they were on the verge of keeping her as the owner backed out due to a change of personal circumstances. Shes Travis' sister (different litter) its lovely that we have her as it our link to Travis after his death at the age of 2 years 11 months. Mollie stayed with them until she was 12 weeks old an important time in a puppies life and she goes absolutely crazy when they visit. When I was well we used to visit J and K quite regularly with Travis and Mollie so she has never ever forgotten them. She absolutely adores them and its lovely to see.
Later that day Amanda came over and spent an hour or so with us. It was great to see her as I hadn't had my Amanda fix for well over a week! Saturday I went and spent the day with my parents at their caravan. A change of four walls was certainly needed! It was a beautiful day and I spent most of it outside in the sunshine lying on a sun lounger. To be honest I stayed too long and ended up getting over tired but I don't mind spending spoons on an activity like this.
Sunday I woke up in horrific pain I had been messing about with my mum showing her some party tricks! Mum still thinks she doesn't have EDS but how many 55 year olds do you know that in a seated position can raise one foot up past their waist? I had to go one better and had one foot on my shoulder and then tried to get my foot behind my head ..... which worked! It didn't hurt at the time but Sunday morning my body was letting me know it really wasn't happy!
Our friend A came over on Sunday as a surprise bearing a caramelised orange cake. I never turn away visit that involves cake (evil chuckle!). A stayed a few hours and it was great to see him as well. Monday was my day of rest and believe me I needed it. I slept for the majority of the day and still was tired!
Tuesday Ellie and Mr G came over for dinner. Imagine an episode of come dine with me! I'm just glad we haven't poisoned them! We made a chicken madras and a vegetable madras for me as I am vegetarian. It was a brilliant evening as Ellie and Mr G brought over a blue ray DVD of aha in concert. In my youth I was a massive aha fan and it was scary that despite not having played any of their stuff for years I knew all the words. My relationship with aha went sour when their lead singer announced he was getting married! I remember crying into my weetabix before school on hearing the news announced on Radio One! I was besotted with Morten and I couldn't believe he had betrayed me in this way. Oh the follies of youth!
Yesterday I spent a fantastic day with Amanda, shes got a brand new car so she took me for a spin! We went down to the sea front and had an ice cream. It was a beautiful day and we could see for miles. I couldn't believe how busy the beach / seafront was. Its odd how far removed I feel from normal everyday life as we drove around the town so much had changed it was like I had moved and just hadn't noticed. Very bizarre!
Today will be a recovery day for me and probably Friday as well. Before I go I have to share this photo with you.
This is Frankie, Willow and Mollie all taking over the sofa! Its so rare that all three are together in one place at one time! I sent this photo out by text message to a few friends with the message "so where are you gonna sit!"
Spoilt rotten! Thanks for reading xx
Thursday, 21 July 2011
Another hospital appointment....
Sorry for being MIA for a week, its been a bit crazy here with a lot going on. I haven't been brilliant health wise and days have just been merging into one another. I suddenly realised I hadn't updated my blog!
Today I had an appointment with my POTS Dr at 9am!!! That was an absolute killer of an appointment to get to. I couldn't get to sleep last night so didn't drop off until gone 11pm and then I woke up at 547am! I thought I had better get up so I could get some caffeine in my system before attempting showering and dressing. My eyes were really puffy so I looked like a frog and really crusted up with sleepy dust.
Russell our dog sitter arrived as arranged at 745am - early wake up call for him as well! Russ is quite shy so its only in the last few visits that hes actually started talking and initiating conversations. I do feel sorry for him as hubs and I are quite loud characters and with the dogs barking as well it must be quite intimidating! For those of you who don't know our dogs can't be left alone without destroying our house. Its far cheaper to employ a dog sitter than to buy a new sofa! (they've eaten 3)
Hubs and I were expecting there to be manic traffic hence setting off at 750am for the hospital. We got there at 815am!!! The quickest time we have ever done the journey in, there was just no traffic. All the traffic lights were also on red at every one we met and hubs drove like an old man to try and waste time and we still arrived ridiculously early. At least we managed to get a disabled parking space, whilst refurbishments are carried out at the hospital the powers that be have decided to get rid of a load of disabled spaces. These are normal sized spaces with no yellow cross hatching around them which makes using a wheelchair quite difficult. Thankfully they have left the wheelchair users spaces alone but there are only six of them. I want to make it clear these aren't the only disabled spaces in the hospital however the other spaces are at a totally different end of the hospital and would mean a long trek for poor hubs pushing me. His back is still dodgy after his crash and I'm not exactly petite so we need the space as close as possible.
Having arrived early we made our way to the restaurant for a cup of tea. We like using the WRVS cafe but its not wheelchair friendly. Park me up and I have blocked all emergency exits and bring the place to a standstill. Its amazes me that you can find so many areas within a hospital, which by its very nature means there will be a more than average amount of wheelchair users, that are totally unsuitable for wheelchair users.
Our appointment was 9am and our consultant finally sauntered in at 915am. I can't abide lateness, I understand sometimes it can't be helped and other things come up but the Dr's are quick enough to have a go at the patients if they turn up late.
My consultant is my POTS Dr but I can't remember what code name I have assigned for him as my brain is struggling to recall detail as the appointment has wiped me out. Essentially he's reasonably happy with how I am doing but is concerned about the amount of headaches and migraines that I am now suffering with. He wants me to play around with the steroid dose to see what dose gives me the best results without a headache.
Hes pleased that I am now able to spend most of the day out of bed rather than having to crash all the time, that's a major step forward however from the sound of it that looks like that's all the improvement he was aiming for which is a little disappointing. I am happy that Ive had an improvement, in fact this is the longest time I have gone without night sweats since 2006 when they first started. That has to be as a direct result of the steroids, I think its preventing my blood pressure from dropping too low whilst I sleep.
He is very concerned about me doing hydrotherapy he doesn't think I will be able to manage to do it. Plus he said being in water changes the way your kidneys work and I will want to pee more. That's already an issue with the number of pee's in a 24 hour period being 20 plus. If I do hydrotherapy I need to drink 500ml of salted water or powerade before the session and then the same afterwards. That's if I manage to do a session without needing a series of pee trips!
There were some other concerns regarding the physio therapy raised by my own GP and my POTS Dr. Last time I wrote about Bev I was really happy after my last physio as she appeared to be knowledgeable about POTS. Unfortunately that doesn't seem to be the case as she is now expecting me to increase my walking - only by a very small amount. Her belief is that POTS is caused by poor muscle tone and by building up my muscles this will decrease my POTS symptoms. In some people this does work, Ive tried it and the results aren't good. It causes me to collapse and actually makes me worse. My GP and Consultant have basically both told me to ignore the walking as I am aware of what I can actually do without compromising my health.
Today I had an appointment with my POTS Dr at 9am!!! That was an absolute killer of an appointment to get to. I couldn't get to sleep last night so didn't drop off until gone 11pm and then I woke up at 547am! I thought I had better get up so I could get some caffeine in my system before attempting showering and dressing. My eyes were really puffy so I looked like a frog and really crusted up with sleepy dust.
Russell our dog sitter arrived as arranged at 745am - early wake up call for him as well! Russ is quite shy so its only in the last few visits that hes actually started talking and initiating conversations. I do feel sorry for him as hubs and I are quite loud characters and with the dogs barking as well it must be quite intimidating! For those of you who don't know our dogs can't be left alone without destroying our house. Its far cheaper to employ a dog sitter than to buy a new sofa! (they've eaten 3)
Hubs and I were expecting there to be manic traffic hence setting off at 750am for the hospital. We got there at 815am!!! The quickest time we have ever done the journey in, there was just no traffic. All the traffic lights were also on red at every one we met and hubs drove like an old man to try and waste time and we still arrived ridiculously early. At least we managed to get a disabled parking space, whilst refurbishments are carried out at the hospital the powers that be have decided to get rid of a load of disabled spaces. These are normal sized spaces with no yellow cross hatching around them which makes using a wheelchair quite difficult. Thankfully they have left the wheelchair users spaces alone but there are only six of them. I want to make it clear these aren't the only disabled spaces in the hospital however the other spaces are at a totally different end of the hospital and would mean a long trek for poor hubs pushing me. His back is still dodgy after his crash and I'm not exactly petite so we need the space as close as possible.
Having arrived early we made our way to the restaurant for a cup of tea. We like using the WRVS cafe but its not wheelchair friendly. Park me up and I have blocked all emergency exits and bring the place to a standstill. Its amazes me that you can find so many areas within a hospital, which by its very nature means there will be a more than average amount of wheelchair users, that are totally unsuitable for wheelchair users.
Our appointment was 9am and our consultant finally sauntered in at 915am. I can't abide lateness, I understand sometimes it can't be helped and other things come up but the Dr's are quick enough to have a go at the patients if they turn up late.
My consultant is my POTS Dr but I can't remember what code name I have assigned for him as my brain is struggling to recall detail as the appointment has wiped me out. Essentially he's reasonably happy with how I am doing but is concerned about the amount of headaches and migraines that I am now suffering with. He wants me to play around with the steroid dose to see what dose gives me the best results without a headache.
Hes pleased that I am now able to spend most of the day out of bed rather than having to crash all the time, that's a major step forward however from the sound of it that looks like that's all the improvement he was aiming for which is a little disappointing. I am happy that Ive had an improvement, in fact this is the longest time I have gone without night sweats since 2006 when they first started. That has to be as a direct result of the steroids, I think its preventing my blood pressure from dropping too low whilst I sleep.
He is very concerned about me doing hydrotherapy he doesn't think I will be able to manage to do it. Plus he said being in water changes the way your kidneys work and I will want to pee more. That's already an issue with the number of pee's in a 24 hour period being 20 plus. If I do hydrotherapy I need to drink 500ml of salted water or powerade before the session and then the same afterwards. That's if I manage to do a session without needing a series of pee trips!
There were some other concerns regarding the physio therapy raised by my own GP and my POTS Dr. Last time I wrote about Bev I was really happy after my last physio as she appeared to be knowledgeable about POTS. Unfortunately that doesn't seem to be the case as she is now expecting me to increase my walking - only by a very small amount. Her belief is that POTS is caused by poor muscle tone and by building up my muscles this will decrease my POTS symptoms. In some people this does work, Ive tried it and the results aren't good. It causes me to collapse and actually makes me worse. My GP and Consultant have basically both told me to ignore the walking as I am aware of what I can actually do without compromising my health.
Wednesday, 13 July 2011
Update from the garden Part 2
Thought I would just finish up the update on the garden. As you can see the Marguerite has probably tripled in size over the last few months. I'm pretty impressed with how well its done.
I like low maintenance plants so I have a few ornamental grasses in the garden. They add a bit of colour and drama to the garden.
Tuesday, 12 July 2011
As promised Photo's of the garden!
So sorry its taken me an absolute age to get my butt in gear and get these photos on for you! I'm really pleased with the garden this year, its looking the best it has in ages!
The picture above is of a clematis that has survived despite all the accidental attempts I have made trying to kill it! Every year it bounces back, forgiving me for my ignorance yet again! I only have one flower on it but I think its beautiful.
This is the pot that the clematis is in, the ferns have self seeded themselves and they were so pretty I decided not to get rid of them. I think the ferns must have come from bird droppings as my next door neighbour has lots of birds that visit her garden. The pink flowers are begonia's, some of these have done really well others look a little pitiful!
Our mini green house has a plastic cover that we can put over it when planting early on in the year. Normally we plant a mixture of salad leaves, radishes and spring onions in the trays. However last year I lost my entire crop of salad leaves to Cabbage White caterpillars, there were so many caterpillars on the leaves that you could see them moving whilst stood in the kitchen. My radish crop was lost to our eldest dog Mollie who brought a whole new meaning to pick your own! Whole trays of radishes would just disappear! The same has happened with the strawberries, hubs and I haven't had a look in! The mini greenhouse has been planted with lobelia and begonia's. I think it looks lovely and really brightens up the garden. It takes a lot of watering as the trays are quite shallow and they dry out very quickly.
I have included this picture with Hubby's Everton Gnome as once I had finished taking pictures I sat in the garden. As I did so a bright orange butterfly - a type I don't recall ever seeing before - landed right on the end of the gnomes nose! I was in hysterics as it looked so funny. Before I could grab the camera to capture the moment it flew away! I was gutted!
This is a shot of my neighbours magnificent Passion Flower that trails over our side of the fence and is simply stunning. Its quite funny as when my neighbour bought this plant two years ago for 10p at a car boot sale her partner told her it was diseased and would never grow! Thankfully she ignored him and its gone from strength to strength. She keeps telling us she's going to charge us a lending fee for having so much of her glorious plant trailing into our garden. A little further down the fence we also have her honeysuckle trailing into our garden. Unfortunately I didn't manage to get a photo of it whilst it was in bloom. The scent that came from it was amazing, it used to fill the whole of the downstairs of our house every morning.
I have a few more photos to post but I will do that later in the week! So as promised an update on the garden part one.
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| Clematis |
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| Base of the clematis |
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| The green house! |
I have included this picture with Hubby's Everton Gnome as once I had finished taking pictures I sat in the garden. As I did so a bright orange butterfly - a type I don't recall ever seeing before - landed right on the end of the gnomes nose! I was in hysterics as it looked so funny. Before I could grab the camera to capture the moment it flew away! I was gutted!
I have a few more photos to post but I will do that later in the week! So as promised an update on the garden part one.
Sunday, 10 July 2011
Once I had a secret love ......
Ok its not actually that secret because my mum, husband and now Amanda all refer to him as my boyfriend!
I am ashamed to admit I have turned into a bit of a cougar. My secret love / crush is Stuart Broad the English Cricket Player! http://en.wikipedia.org/wiki/Stuart_Broad
I don't know why I love my little Stuie so much but it means the long hours of watching cricket with my husband are certainly more interesting! Imagine my distress yesterday when I discovered he had been dropped from the one day side!
From a young age I've always been drawn to blonde men. Which is quite unlucky for my husband who is dark haired with blue/green eyes! I've never actually dated any blonde men as they are quite a rarity but I am now content to gaze from afar and appreciate their beauty!
My crush is so well known that today Amanda has just text me to tell me my boyfriend is on the grid at Silverstone before the grand prix starts. My mother will phone me and say "your boyfriend did well in the cricket today" if Stu has been taking wickets. My husband will shout "Your boyfriend is bowling". I think its hilarious as all I did one day was comment on the fact the Stu is mighty fine. The rest has all been them!
I am embarressed about my little crush as Stu is so much younger than me! I can't help it I just think he's lovely. Although I was cross with him over his behaviour in the last cricket match which caused him to lose 50% of his match fee.
Hubs has told me its quite ok if I want to have a poster of Stu up on the wall! I can't do that however as if I have a poster it means he will want a poster of one of his celebrity crushes and I will end up feeling insecure and jealous. I know pathetic isn't it.
At least my love of Stu means I can now sit and watch cricket for hours without getting bored as long as theres a chance I will get a glimpse of Mr Broad.
Blessings xxx
I am ashamed to admit I have turned into a bit of a cougar. My secret love / crush is Stuart Broad the English Cricket Player! http://en.wikipedia.org/wiki/Stuart_Broad
I don't know why I love my little Stuie so much but it means the long hours of watching cricket with my husband are certainly more interesting! Imagine my distress yesterday when I discovered he had been dropped from the one day side!
From a young age I've always been drawn to blonde men. Which is quite unlucky for my husband who is dark haired with blue/green eyes! I've never actually dated any blonde men as they are quite a rarity but I am now content to gaze from afar and appreciate their beauty!
My crush is so well known that today Amanda has just text me to tell me my boyfriend is on the grid at Silverstone before the grand prix starts. My mother will phone me and say "your boyfriend did well in the cricket today" if Stu has been taking wickets. My husband will shout "Your boyfriend is bowling". I think its hilarious as all I did one day was comment on the fact the Stu is mighty fine. The rest has all been them!
I am embarressed about my little crush as Stu is so much younger than me! I can't help it I just think he's lovely. Although I was cross with him over his behaviour in the last cricket match which caused him to lose 50% of his match fee.
Hubs has told me its quite ok if I want to have a poster of Stu up on the wall! I can't do that however as if I have a poster it means he will want a poster of one of his celebrity crushes and I will end up feeling insecure and jealous. I know pathetic isn't it.
At least my love of Stu means I can now sit and watch cricket for hours without getting bored as long as theres a chance I will get a glimpse of Mr Broad.
Blessings xxx
Saturday, 9 July 2011
The lies we tell.....
I don't know about you but I find myself telling lies quite frequently......
Gosh that makes me sound like a really bad person! If you talk to anyone that suffers with a chronic health condition they will probably tell the same lies as I do.
The lies I tell are always related to my health.......I wish all this blog had been a lie and really I am alive and well living the life of Riley!
I have friends and family divided into two camps, those I tell the truth to when they ask how I am, no matter how bad it is and those friends and Family that I don't bother with as either a) they don't care and are asking out of a sense of duty, b) they don't get it and I really don't have the energy to waste explaining it again or c) I want to pretend I am back in my old life.
There are people that ask me how I am and I will reply "yeah I'm fine" and then quickly turn the conversation around to something about them to distract them from the fact that I just lied to their faces. There are also some people that do care about how I am but I still lie, because I want my old life back and I don't want the conversation to be dominated by my latest health issue. If I say I am fine I don't need to expand on it. Those people I think know, that I am lying and are happy to conspire with me.
My family you will be relieved to know are on the list of people I tell the truth to. With my mother who can tell how I am doing purely by my voice on answering the phone, there is no point in lying. She popped around today, she text me to tell me that she and my father were on their way over. It was 3pm and I had just crawled into bed. I was having one of those days where I didn't feel right, I felt unwell but I couldn't tell you why, as in there was no sore throat, no cold, no upset stomach. I just felt really hot (which is bizarre for me) and not right.
I crawled out of bed as I really wanted to see them, sorted the dogs out so they would be entertained when my folks came around and realised standing was making me feel like a space cadet. I sat down as the room had started spinning. I was having what is known as a POTSY day! I tried really hard to pretend I was OK whilst my parents were here as Hubs is working until 10pm. After their visit I would be alone and I knew they would worry. It didn't work, my eyes felt like they were rolling around in their sockets and I was gasping for breath. I ended up admitting that I had just crawled into bed when mum text me. This was met with "why didn't you say?" To be honest I don't know why I didn't. I just like seeing them so much, that I would walk over hot coals to do so.
Mum told me my eyes looked weird.....I will leave that to your imagination. They felt weird like they bulging out of my head. I also, according to her looked pasty, which again although I am pale in the last 6 months I have developed a permenant facial flush so I look quite well. Over the last few weeks the facial flush has gone and I have been left looking like casper the freindly ghost and I have dark circles under my eyes. I had actually caught sight of myself in the mirror before they arrived and had I had time before they got here I would have put some make up on to hide the fact I looked so bad!
I hate the fact that my parents now only stay an hour when they visit me as anything more knocks me out. I get so excited when the visit the pure adrenaline knocks me side ways. I hate the fact I can't visit them and I can't be a proper daughter and do things for them. Instead they have to do things for me. Its only little things like I wanted some track suit trousers to wear to physio but I can't get out of the house to shop. Well actually I could but it would take a week to recover. I refuse all their offers of help inside the house, it make me angry if they help. Even mum making a cup of tea for me makes me feel bad. I can't stand her helping me, its insane, its what mums do but it makes me feel guilty that I've added so much stress and worry to both my parents lives. It's a time in their lives where they should be free to do as they please as both kids have left the nest yet they are still tied down by us. The guilt I carry due to this is enormous.
So much has changed in the last year that I struggle to deal with the fact that 12 months ago I thought I was in the worst condition I had ever been in yet 2011 seems to want to surpass it. Yes I have had victories, we finally have put a few of the pieces of the puzzle together through my determination and persistence. Yet my health has further declined there is no magic pill for me to take that will see this all go away.
And that is what seems to irk some family members and friends that there is treatment but no cure. Some people confuse treatment with cure. They can not understand that I no longer seem to have very many good weeks or even days now.
Today I lied to a friend that this week had been good because I couldn't face sending another text message saying I felt terrible. I know if I was in her position (before all this happened to me) I wouldn't have understood how someone in this day and age could feel so ill all the time. I didn't understand how my sister could be so ill so what chance did a friend stand? I didn't have time to be wrapped up in someone else's life like that. I was too busy working and enjoying myself to stop and think for a moment what it would be like.
I hate myself for lying but what good does it do her to know that I feel like death warmed up? There's nothing she can do to help because all I want to do is crawl into bed.
I hate the fact that I have got to see both sides of the coin, I want the good side back.
What I will say is that this collection of illnesses has made made me a more understanding and compassionate person. I have learnt that I shouldn't judge a book by its cover and not all disabilities are visible. Its allowed me to reassess my life and realise that Mulberry/Radley handbags are nice but they aren't necessary for you to live your life. Some might say I've grown up, if they do then it was my illness that made it happen.
Don't get me wrong if I could get rid of my conditions and return to a normal life I would. But I wouldn't want the trade off to be that I lose the person I have become now. That my friends is no lie.
Gosh that makes me sound like a really bad person! If you talk to anyone that suffers with a chronic health condition they will probably tell the same lies as I do.
The lies I tell are always related to my health.......I wish all this blog had been a lie and really I am alive and well living the life of Riley!
I have friends and family divided into two camps, those I tell the truth to when they ask how I am, no matter how bad it is and those friends and Family that I don't bother with as either a) they don't care and are asking out of a sense of duty, b) they don't get it and I really don't have the energy to waste explaining it again or c) I want to pretend I am back in my old life.
There are people that ask me how I am and I will reply "yeah I'm fine" and then quickly turn the conversation around to something about them to distract them from the fact that I just lied to their faces. There are also some people that do care about how I am but I still lie, because I want my old life back and I don't want the conversation to be dominated by my latest health issue. If I say I am fine I don't need to expand on it. Those people I think know, that I am lying and are happy to conspire with me.
My family you will be relieved to know are on the list of people I tell the truth to. With my mother who can tell how I am doing purely by my voice on answering the phone, there is no point in lying. She popped around today, she text me to tell me that she and my father were on their way over. It was 3pm and I had just crawled into bed. I was having one of those days where I didn't feel right, I felt unwell but I couldn't tell you why, as in there was no sore throat, no cold, no upset stomach. I just felt really hot (which is bizarre for me) and not right.
I crawled out of bed as I really wanted to see them, sorted the dogs out so they would be entertained when my folks came around and realised standing was making me feel like a space cadet. I sat down as the room had started spinning. I was having what is known as a POTSY day! I tried really hard to pretend I was OK whilst my parents were here as Hubs is working until 10pm. After their visit I would be alone and I knew they would worry. It didn't work, my eyes felt like they were rolling around in their sockets and I was gasping for breath. I ended up admitting that I had just crawled into bed when mum text me. This was met with "why didn't you say?" To be honest I don't know why I didn't. I just like seeing them so much, that I would walk over hot coals to do so.
Mum told me my eyes looked weird.....I will leave that to your imagination. They felt weird like they bulging out of my head. I also, according to her looked pasty, which again although I am pale in the last 6 months I have developed a permenant facial flush so I look quite well. Over the last few weeks the facial flush has gone and I have been left looking like casper the freindly ghost and I have dark circles under my eyes. I had actually caught sight of myself in the mirror before they arrived and had I had time before they got here I would have put some make up on to hide the fact I looked so bad!
I hate the fact that my parents now only stay an hour when they visit me as anything more knocks me out. I get so excited when the visit the pure adrenaline knocks me side ways. I hate the fact I can't visit them and I can't be a proper daughter and do things for them. Instead they have to do things for me. Its only little things like I wanted some track suit trousers to wear to physio but I can't get out of the house to shop. Well actually I could but it would take a week to recover. I refuse all their offers of help inside the house, it make me angry if they help. Even mum making a cup of tea for me makes me feel bad. I can't stand her helping me, its insane, its what mums do but it makes me feel guilty that I've added so much stress and worry to both my parents lives. It's a time in their lives where they should be free to do as they please as both kids have left the nest yet they are still tied down by us. The guilt I carry due to this is enormous.
So much has changed in the last year that I struggle to deal with the fact that 12 months ago I thought I was in the worst condition I had ever been in yet 2011 seems to want to surpass it. Yes I have had victories, we finally have put a few of the pieces of the puzzle together through my determination and persistence. Yet my health has further declined there is no magic pill for me to take that will see this all go away.
And that is what seems to irk some family members and friends that there is treatment but no cure. Some people confuse treatment with cure. They can not understand that I no longer seem to have very many good weeks or even days now.
Today I lied to a friend that this week had been good because I couldn't face sending another text message saying I felt terrible. I know if I was in her position (before all this happened to me) I wouldn't have understood how someone in this day and age could feel so ill all the time. I didn't understand how my sister could be so ill so what chance did a friend stand? I didn't have time to be wrapped up in someone else's life like that. I was too busy working and enjoying myself to stop and think for a moment what it would be like.
I hate myself for lying but what good does it do her to know that I feel like death warmed up? There's nothing she can do to help because all I want to do is crawl into bed.
I hate the fact that I have got to see both sides of the coin, I want the good side back.
What I will say is that this collection of illnesses has made made me a more understanding and compassionate person. I have learnt that I shouldn't judge a book by its cover and not all disabilities are visible. Its allowed me to reassess my life and realise that Mulberry/Radley handbags are nice but they aren't necessary for you to live your life. Some might say I've grown up, if they do then it was my illness that made it happen.
Don't get me wrong if I could get rid of my conditions and return to a normal life I would. But I wouldn't want the trade off to be that I lose the person I have become now. That my friends is no lie.
Wednesday, 6 July 2011
PHYSIO
Just thought I would update you all on how my physio therapy session went today.
It wasn't a brilliant start to the day as I woke up in an excessive amount of pain and managed to annoy my right hip without even trying. Before even going to physio I doubled the morphine as the pain was bad!
The physio therapy is actually taking place in the hospital where I was born, its no longer a maternity hospital but both my sister and I were born there many moons ago! The first thing hubs and I noticed was how lovely all the staff are. A member of staff worked out that Hubs and I were lost - probably through the raised voices whilst we were arguing about which was the best way to go! She stepped right in and took us to the department, joking with us that the place was a rabbit warren! I couldn't believe it, at the big hospital none of the staff could give a hoot if you are lost they keep their heads down and keep walking. If you need help you have to actively approach them. It just shows what a difference there is between a small hospital and a large one.
We were seen early!!! I should have made sure you were sitting down before I said that! Bev was absolutely fabulous explaining that she has several patients with EDS and POTS. She also went through the fact that benign joint hypermobility syndrome now no longer exists as a medical term and it all comes under EDS 3 (hypermobility). Its a shame that most of the Dr's I deal with still don't understand this.
I spent the first 40 minutes going through medical history, what joints cause me the main problems (I told her it was easier just to tell her that the only things that don't hurt are my toes!), What medications I am on, how Hubs supports me, Hubs health problems and who looks after him, so he can look after me. It was extremely thorough, she even asked about social activities and hobbies. Hubs pipped up and said "she has a blog and loads of people read it" Bless him hes so proud of me that I've had over 2,000 hits! I can't face telling him that some people may just find this blog by accident and not actually read any of it!
I then had to do my party tricks for her, these are the standard movements that EDS people have to demonstrate they can do. So the first one is putting your hands on the floor without bending your knees (piece of cake), then it was put the back of your head on your back - I didn't realise that wasn't normal until a few weeks ago! Then bring your thumb to your forearm - check both sides. Then it was do your fingers go back more than 90 degrees - all my fingers do other than my thumbs. So EDS was confirmed again but she was concerned that my heart hadn't been checked out yet for a mitrial valve prolapse which is more common in EDS patients. With my paternal grandfather having two aneurysms it is possible I could have vascular EDS, so it needs to be ruled out. She will be writing to my GP about this and the fact I am not under a rhuematologist, which I need to be.
I am now banned from performing party tricks! As they are damaging my joints and making the ligaments and tendons lax. Bev hopes to teach me what is a normal joint movement and what isn't. Its very strange as normal feels restricted and weird. Doing things the EDS way is comfortable but in the long term is making things weaker.
Bev also thinks that my nervous system is a bit confused at the moment as its perceiving just a light touch as a painful stimuli. Her finger literally touched the back of my neck and I was yelping. I felt like such a baby. She said my brain needs retraining on what its sensing as its over reacting. I said it makes me feel foolish as I know it shouldn't hurt but it does. She was so kind and caring she told me if it hurts it hurts, my nervous system is out of whack and we will put it right.
Ive now got a couple of very gentle exercises to do several times a day. I have to start with two repetitions and slowly work up to five. We are working on my core muscles - very low stomach muscles which I have to tense for a couple of seconds and then release. Its quite funny as when I did this I incorporated pelvic floor exercises as well. Bless hubs he pipes up "whats your pelvic floor?" Bev and I looked at each other and I turned to him and said "its your fanny muscles" (for my American readers an English Fanny is not the same as an American Fanny). Bev fell about laughing and then tried to explain to hubs, who was now beetroot, that blokes have pelvic floors as well!
I explained to Bev that these trips to appointments over stimulate me and that I will end up in bed for a few days due to exhaustion. She said that we would always in that case do our sessions in a private room so I didn't have any noise from other patients and staff. I just couldn't believe how thoughtful she was. She also didn't tell me to ditch the wheelchair, she understood with the POTS walking isn't an option for me. It was wonderful to actually have someone in the medical profession that gets it.
Our session ended with Bev asking me what my goals are. I said "I want to walk on the common with my dogs for hours, I want to go running again." Bev looked me in the eyes, put her hand on my knee and said "Rachel that's never going to happen" I know shes right. She continued "by having that as a goal you are setting yourself up for a big disappointment. How about our goal is this time next year you can do two ten minute walks per week". I said "I can live with that. I know I have to accept life isn't going to be the same again, its just really hard. Even though its been 4 years I still can't quite admit to myself that I can't do what I used to and never will".
Even though I've had that conversation and admitted that I won't be able to do it I'm still in denial. I think I just don't want to face it as the idea that I will never be able to do it breaks my heart. Its like the fact I use a wheelchair, yep I use it but I still can't accept I really can't walk very far. I suppose in a way its a coping mechanism and human nature, to try and banish those thoughts from my mind.
With Bev my physio I know she isn't going to sugar coat it, she's going to be honest with me and shes going to be a partner in my journey. She's just what I need right now.
Thanks for reading, blessings xxx
Ive had to edit the post as a paragraph disappeared. Sorry.
It wasn't a brilliant start to the day as I woke up in an excessive amount of pain and managed to annoy my right hip without even trying. Before even going to physio I doubled the morphine as the pain was bad!
The physio therapy is actually taking place in the hospital where I was born, its no longer a maternity hospital but both my sister and I were born there many moons ago! The first thing hubs and I noticed was how lovely all the staff are. A member of staff worked out that Hubs and I were lost - probably through the raised voices whilst we were arguing about which was the best way to go! She stepped right in and took us to the department, joking with us that the place was a rabbit warren! I couldn't believe it, at the big hospital none of the staff could give a hoot if you are lost they keep their heads down and keep walking. If you need help you have to actively approach them. It just shows what a difference there is between a small hospital and a large one.
We were seen early!!! I should have made sure you were sitting down before I said that! Bev was absolutely fabulous explaining that she has several patients with EDS and POTS. She also went through the fact that benign joint hypermobility syndrome now no longer exists as a medical term and it all comes under EDS 3 (hypermobility). Its a shame that most of the Dr's I deal with still don't understand this.
I spent the first 40 minutes going through medical history, what joints cause me the main problems (I told her it was easier just to tell her that the only things that don't hurt are my toes!), What medications I am on, how Hubs supports me, Hubs health problems and who looks after him, so he can look after me. It was extremely thorough, she even asked about social activities and hobbies. Hubs pipped up and said "she has a blog and loads of people read it" Bless him hes so proud of me that I've had over 2,000 hits! I can't face telling him that some people may just find this blog by accident and not actually read any of it!
I then had to do my party tricks for her, these are the standard movements that EDS people have to demonstrate they can do. So the first one is putting your hands on the floor without bending your knees (piece of cake), then it was put the back of your head on your back - I didn't realise that wasn't normal until a few weeks ago! Then bring your thumb to your forearm - check both sides. Then it was do your fingers go back more than 90 degrees - all my fingers do other than my thumbs. So EDS was confirmed again but she was concerned that my heart hadn't been checked out yet for a mitrial valve prolapse which is more common in EDS patients. With my paternal grandfather having two aneurysms it is possible I could have vascular EDS, so it needs to be ruled out. She will be writing to my GP about this and the fact I am not under a rhuematologist, which I need to be.
I am now banned from performing party tricks! As they are damaging my joints and making the ligaments and tendons lax. Bev hopes to teach me what is a normal joint movement and what isn't. Its very strange as normal feels restricted and weird. Doing things the EDS way is comfortable but in the long term is making things weaker.
Bev also thinks that my nervous system is a bit confused at the moment as its perceiving just a light touch as a painful stimuli. Her finger literally touched the back of my neck and I was yelping. I felt like such a baby. She said my brain needs retraining on what its sensing as its over reacting. I said it makes me feel foolish as I know it shouldn't hurt but it does. She was so kind and caring she told me if it hurts it hurts, my nervous system is out of whack and we will put it right.
Ive now got a couple of very gentle exercises to do several times a day. I have to start with two repetitions and slowly work up to five. We are working on my core muscles - very low stomach muscles which I have to tense for a couple of seconds and then release. Its quite funny as when I did this I incorporated pelvic floor exercises as well. Bless hubs he pipes up "whats your pelvic floor?" Bev and I looked at each other and I turned to him and said "its your fanny muscles" (for my American readers an English Fanny is not the same as an American Fanny). Bev fell about laughing and then tried to explain to hubs, who was now beetroot, that blokes have pelvic floors as well!
I explained to Bev that these trips to appointments over stimulate me and that I will end up in bed for a few days due to exhaustion. She said that we would always in that case do our sessions in a private room so I didn't have any noise from other patients and staff. I just couldn't believe how thoughtful she was. She also didn't tell me to ditch the wheelchair, she understood with the POTS walking isn't an option for me. It was wonderful to actually have someone in the medical profession that gets it.
Our session ended with Bev asking me what my goals are. I said "I want to walk on the common with my dogs for hours, I want to go running again." Bev looked me in the eyes, put her hand on my knee and said "Rachel that's never going to happen" I know shes right. She continued "by having that as a goal you are setting yourself up for a big disappointment. How about our goal is this time next year you can do two ten minute walks per week". I said "I can live with that. I know I have to accept life isn't going to be the same again, its just really hard. Even though its been 4 years I still can't quite admit to myself that I can't do what I used to and never will".
Even though I've had that conversation and admitted that I won't be able to do it I'm still in denial. I think I just don't want to face it as the idea that I will never be able to do it breaks my heart. Its like the fact I use a wheelchair, yep I use it but I still can't accept I really can't walk very far. I suppose in a way its a coping mechanism and human nature, to try and banish those thoughts from my mind.
With Bev my physio I know she isn't going to sugar coat it, she's going to be honest with me and shes going to be a partner in my journey. She's just what I need right now.
Thanks for reading, blessings xxx
Ive had to edit the post as a paragraph disappeared. Sorry.
Tuesday, 5 July 2011
Its Tuesday.....
Its Tuesday......
What can I say?
My MG like symptoms have disappeared for the time being and I haven't had to take mestinon since Saturday night and I haven't used oxygen either.
I am having problems typing as my ring finger and little finger on my left hand keep curling up towards the palm of my hand and I can no longer straighten them. Its been happening for a few months now I am pretty sure its called Dupuytrens contracture - another connective tissue disorder. My maternal grandfather suffered with it, its genetic but Dr's also blame smoking......Well they are just going to have to shout at me over that one. I don't go out, I barely drink I have problems eating, smoking is the one thing in life I enjoy. I just don't feel like giving up at the moment. Its my emotional crutch, its all I have left from my old life.
It feels like a dirty little secret that I smoke. I am ashamed of the fact that I am a slave to nicotine but don't condemn me as I'm not forcing it on you. I don't smoke around kids, I feel it sets a bad example. I don't smoke in my house as it wrecks the decor and makes the place stink. I know my parents would be over the moon if I gave up. Its just I don't want to, when I do I will make the effort. Life's hard enough at the minute without adding to it.
At present it feels like it doesn't matter how many hours I sleep I still can't re-charge my batteries. I'm constantly exhausted, my mood is a million times better but I still have no energy. I am blaming the heat and the strange changeable weather we are having at present. Its raining here today.....thank god it saves me nagging hubs to water the garden later.
So I don't have much news but I thought I would let you all know how I am after last week.
Tomorrow I have my first physio therapy session.......wish me luck. All I ask is that I don't end up in more pain than I am already and the woman understands about POTS and exercise intolerance!
What can I say?
My MG like symptoms have disappeared for the time being and I haven't had to take mestinon since Saturday night and I haven't used oxygen either.
I am having problems typing as my ring finger and little finger on my left hand keep curling up towards the palm of my hand and I can no longer straighten them. Its been happening for a few months now I am pretty sure its called Dupuytrens contracture - another connective tissue disorder. My maternal grandfather suffered with it, its genetic but Dr's also blame smoking......Well they are just going to have to shout at me over that one. I don't go out, I barely drink I have problems eating, smoking is the one thing in life I enjoy. I just don't feel like giving up at the moment. Its my emotional crutch, its all I have left from my old life.
It feels like a dirty little secret that I smoke. I am ashamed of the fact that I am a slave to nicotine but don't condemn me as I'm not forcing it on you. I don't smoke around kids, I feel it sets a bad example. I don't smoke in my house as it wrecks the decor and makes the place stink. I know my parents would be over the moon if I gave up. Its just I don't want to, when I do I will make the effort. Life's hard enough at the minute without adding to it.
At present it feels like it doesn't matter how many hours I sleep I still can't re-charge my batteries. I'm constantly exhausted, my mood is a million times better but I still have no energy. I am blaming the heat and the strange changeable weather we are having at present. Its raining here today.....thank god it saves me nagging hubs to water the garden later.
So I don't have much news but I thought I would let you all know how I am after last week.
Tomorrow I have my first physio therapy session.......wish me luck. All I ask is that I don't end up in more pain than I am already and the woman understands about POTS and exercise intolerance!
Friday, 1 July 2011
Thank You
I just wanted to do a quick post and say a big thank you to those of you who have read my blog and taken the time to leave comments. It really means the world to me to know you care so much about me.
I bit the bullet yesterday and took 60mg it worked within 20mins and lasted 6 hours. However I did have some stomach cramps and a lot of gas! Not very lady like I know! My vision in my right eye was still blurry but I could see well enough to get on with bits and bobs.
Today I've had ptosis but it was just my eye brow drooping which made me look like I had a lazy eye. I have had more breathing problems today and have ended up using oxygen for a couple of hours. I had the old MG feeling back where you breathe but just don't seem to get enough air in to satisfy you. I took 30mg of mestinon which resolved the ptosis and made my breathing easier.
My tum is a bit raw from the mestinon this week. It is extremely unusual for me to take it more than once in a week. I only tend to use it if my eye closes completely, or both eyes close or I can't catch my breath. I have ptosis everyday but its usually very slight and doesn't close my eye just makes the lid droop, on those days I just tend to get on with it as believe it or not I actually don't like taking tablets. It seems ridiculous for someone who takes over 20 tablets a day to say that, but I only ever take what I need. If I can do without the mestinon I don't take it. Plus the side effects of mestinon are enough to put anyone off!
I can't remember who suggested 45mg instead of 60mg but thank you. Why I didn't think of that (slaps forehead!) I don't know but I think that might be better than 60mg at the moment. Also special mention to Rachel again .....thank you for looking up EDS that is so sweet of you. Unfortunately it is a painful disorder that not only affects your joints but your organs as well. The problem I have is I get weak muscles from both the POTS and EDS which causes my joints to be unstable. Hence my spine popping discs out left right and centre. If I have MG as well, (which come on its highly likely) what chance do I have with that making the muscles weak also!!!
Thank you again Em, Shalyn, Rachel, Minxy for your lovely comments. Sorry if I have missed anyone out. Going to finish up here as getting short of breath again and Hubs needs to get my oxygen up to me. No need to panic this happens a lot. I will also be taking 45mg of mestinon as that helps as well.
Thanks again xx
I bit the bullet yesterday and took 60mg it worked within 20mins and lasted 6 hours. However I did have some stomach cramps and a lot of gas! Not very lady like I know! My vision in my right eye was still blurry but I could see well enough to get on with bits and bobs.
Today I've had ptosis but it was just my eye brow drooping which made me look like I had a lazy eye. I have had more breathing problems today and have ended up using oxygen for a couple of hours. I had the old MG feeling back where you breathe but just don't seem to get enough air in to satisfy you. I took 30mg of mestinon which resolved the ptosis and made my breathing easier.
My tum is a bit raw from the mestinon this week. It is extremely unusual for me to take it more than once in a week. I only tend to use it if my eye closes completely, or both eyes close or I can't catch my breath. I have ptosis everyday but its usually very slight and doesn't close my eye just makes the lid droop, on those days I just tend to get on with it as believe it or not I actually don't like taking tablets. It seems ridiculous for someone who takes over 20 tablets a day to say that, but I only ever take what I need. If I can do without the mestinon I don't take it. Plus the side effects of mestinon are enough to put anyone off!
I can't remember who suggested 45mg instead of 60mg but thank you. Why I didn't think of that (slaps forehead!) I don't know but I think that might be better than 60mg at the moment. Also special mention to Rachel again .....thank you for looking up EDS that is so sweet of you. Unfortunately it is a painful disorder that not only affects your joints but your organs as well. The problem I have is I get weak muscles from both the POTS and EDS which causes my joints to be unstable. Hence my spine popping discs out left right and centre. If I have MG as well, (which come on its highly likely) what chance do I have with that making the muscles weak also!!!
Thank you again Em, Shalyn, Rachel, Minxy for your lovely comments. Sorry if I have missed anyone out. Going to finish up here as getting short of breath again and Hubs needs to get my oxygen up to me. No need to panic this happens a lot. I will also be taking 45mg of mestinon as that helps as well.
Thanks again xx
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