not doing so good…

As you have probably guessed I’m not doing so good. My Pots is very bad and I’m now having an EDS flare up on top of that probably caused by the fact my movement has been very limited.

My mood is good I’m not getting depressed by it all a bit fed up on occasion, but overall I’m doing OK.

I have been in contact with my GP on pretty much a weekly basis and he is now contacting my hospital consultant to see if he has any ideas on how to improve things. I have done all the usually things like increase fluids and salt. I’m sleeping on 4 pillows at night to keep my head raised as my reflux is so bad I am waking with a mouthful of my stomach contents in the middle of the night. That’s quite frightening as I worry about choking on my own vomit whilst asleep. Nothing is working. My steroids Florinef were increased to two tablets a day this just lead to painful headaches despite taking the pizotifen.

My BP is barely getting over 100/60 and most days is sitting in the 90’s/60’s not massively low but low for me and it makes me dreadfully tired. My symptoms of POTS are much more pronounced, climbing the stairs is killing me! I’m getting tachycardia after eating, trying to take a shower has now become a challenge I subject myself to every few days as I just feel so ill during a shower and its taking me hours to recover from.

I’m also suffering with post prandial hypotension especially after lunch. Around one hour after I have eaten I can’t stay awake. My eyes just roll in my head and I have no choice but to sleep. Its a weird sleep as everything just goes black and it can’t be fought.

So as you can see things aren’t great but I am coping with the support of my husband, family and friends. Plus my doggies who love spending everyday curled up to me on the bed!

Miss Marple triumphs!

Yesterday morning I was feeling so awful I rang the Doctors surgery to own up to the fact it was me that sent the anonymous letter to my GP – having forgotten to write my name and address on it. Thankfully my GP had applied his Miss Marple skills of detection and had worked out who the author was!

Thirty minutes after contacting the surgery the reception team rang me back to confirm that he had realised it was me and was going to ring me that day. At 6pm last night he rang and was so sweet, he didn’t even mention my faux pas! We are going to try some migraine prevention medication – can’t remember what its called. I have to take a low dose for a week, increasing on the second week. On the second week of the migraine treatment I am to up my florinef (fludrocortisone) back to two tablets daily. I had to reduce the dose a while ago as they were giving me migraines every few days. We are hoping that this will enable me to take the higher dose of florinef and hopefully alleviate the horrible Potsy symptoms I am experiencing at the moment.

He did advise me that it was going to be a long journey to find the right combination of medications to alleviate as much as the Pots symptoms as possible. I said I understood that and I also knew from the research I had done the combination of Postural Orthostatic Tachycardia and Ehler Danlos syndrome was the most difficult to treat.

I am going to have to leave it there as my head is starting to feel funny and I am starting to lose cognitive function.

Thanks xx

Physio…..what to do?

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.

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

latest update

Thank god its Friday, its seemed like a very long week and I am exhausted. Two Trips to the local hospital have wiped me out. Yesterday I had a three hour nap in the afternoon and went back to bed at 1730. I slept for eleven hours only waking up once at 2am when it started raining and it reminded me I needed to go to the toilet!

My fludrocortisone has been increased to two tablets a day as my blood pressure at the consultants office was 105/60. In the normal range but low if you take into account by weight, height and age. The consultant who is extremely funny said “your blood pressure has reached the dizzying heights of 105”. He would like me to go back onto mestinon regularly as it increases your blood pressure on standing, however he is doing some research to see if he can find a drug I can take that will help me tolerate it. I used to take propanthaline, with the gastroparesis this kind of drug is no longer allowed as it slows everything down. Mestinon speeds everything up digestion wise so its quite good for gastroparesis, I just find the side effects too much.

The consultant didn’t seem to find the idea of loads of physio and hydrotherapy such a brilliant idea. He told me my POTS was too unstable at the moment to be entertaining such an idea. He then dictated a letter to the Rheumy I saw Wednesday saying he must be involved in any plans she had. I did tell him that I felt she had absolutely no idea about POTS and was worried that in her ignorance she could do some damage.

Their two approaches are completely different, POTS man won’t allow me out of my wheel chair in his office. Rheumy lady made me walk the furthest I have walked in years causing me immense pain and shortness of breath. When I complained I was told “just because you are in pain it doesn’t mean its doing damage”. Tell that to my hips and back that have been in an elevated level of pain since you made me do that. At a cost of over £4 a minute she has not only hurt my wallet but my body too. I should have been stronger and said no, however non compliance never goes down well in the medical world. You become an attention seeker or mentally ill if you refuse to do something.

I have taken my pain killer cocktail today 2 Naproxen (250mg each), 2 paracetamol (4 hourly), 2 Tramadol (6 hourly) and I am still hurting. So the pain is at a five, my back has seized up and is going in and out of spasm. My wrists and hands hurt and my head is refusing to support my neck. I know I need to exercise to strengthen the muscles I’m not disputing that. What I didn’t need was to be forced to run a marathon on the first day. OK so it was a walk down the corridor but it felt like a bloody marathon. Not only that but she followed me so I couldn’t get back in my wheel chair the minute her back was turned which was the plan because I knew the amount of pain I would be in.

When I get pain like this its not only the joints but my internal organs feel like they have moved. Its a bizarre thing to say but its the only way to describe it. When my chiropractor used to manipulate my pelvis as it rotates of its own accord I was left with the same churned up feeling inside, like everything was in the wrong place.

My old chiropractor called Heather was brilliant, one of the nicest people you could ever meet. Unfortunately she moved her practice out of my town and now its too much for me to travel and see her. She kept saying years ago when she treated me that there was something very wrong with my joints, due to the way the manipulations never held and my back would just seize up so I couldn’t bend. She discussed it with her colleagues but they didn’t have the medical knowledge to know what it was. I brought it up with my GP at the time (the one my mum gave it to with both barrels) unfortunately he thought chiropractors were just one step away from witch doctors on the alternative medicine scale. So it went no further.

Since the EDS diagnosis all I have done is cringe at all the damage I have done to myself. I was incredibly active, much more active than any of my friends. I loved doing exercise video’s, running, walking, playing tennis and netball. When I hurt myself I would work through the pain. In 1999 I really damaged my back at an exercise class. We were doing the warm down and I was relaxing lying on the floor doing a stretch and then there was a massive crunch and I couldn’t move my legs. The crunch was so loud that several people sat up and turned around. That was the injury that really screwed up my back ……..done in the warm down. I had slipped discs before but this was something else. I tried to carry on but I couldn’t put my legs back flat on the floor when lying on a hard surface. I went to work the next day but came home a few hours later sobbing as the pain was so intense. I remember my sympathetic female boss at the time telling me to “suck it up and stop acting like a baby”. I was in agony and didn’t know what to do with myself.

My back has never been the same after that injury. The GP told me I had slipped a disc and to do some gentle walking. I have been left with bouts of nerve pain down my left leg where it burns or the skin becomes so sensitive I can’t stand anything touching it. I have been back and forth to the Dr’s telling them I am in pain and just got handed pills. I was around 25-26 years old and I guessed they just presumed I was young and fit enough to shake it off.  That’s over ten years ago and I am still suffering.

The EDS diagnosis has also made a lot of sense. Of course I knew that I had it, I’ve known for about a year after joining various forums and looking at the Beighton Scale and the Brighton Criteria. I had always thought I was a wimp when it came to the dentist, I would be pumped full of local anaesthetic and it would still hurt, despite the dentist telling me it couldn’t. I thought it was all in my head, that it didn’t hurt it was just my fear making it hurt. You will tell yourself all sorts of things if someone in the medical profession is telling you it doesn’t hurt.

So now I just await my torture sorry I mean physio appointment and see what they can do for me. Unfortunately it means more trips into the local hospital and more exhaustion, before I have even attempted to make my muscles stronger. Its a vicious circle but I need to do something. Even if the rheumy said she doubted that they would get my pain under control…..thanks for that love I’m 37 the chances are I will live until I am at least 80. So if I manage that I have another 43 years of pain to endure. I think I am just going to have to take it one day at a time!

Good Friday 2011

I’ve had a rubbish week, the heat has really kicked the POTs up a gear and I am no longer sure that the florinef (steroid) is actually doing anything.

This morning I awoke to my eyelids and under my eyes so swollen I could barely see. I popped to the loo and looked in the mirror I looked like kermit the frog. There were just little tiny slits where my eyes should be. I had to go back to bed and wait an hour before I could see! So the florinef is making me retain fluid, I know because my weight is going up and down by as much as half a stone on a daily basis. I am struggling to get my shoes on and my hands are extremely puffy. All in all I look great! But unfortunately I think that’s all it is doing.

Even with me retaining fluid I am still urinating at least twice an hour. I keep meaning to count the number of times I urinate in a day but I actually lose count. I am up at least 4 times in the night to urinate. I would love just one nights sleep that wasn’t interrupted by pain or urinating or night sweats!

 I know I drink a lot I have always suffered with excessive thirst. I have been tested for diabetes more times than I have had hot dinners, its always negative. I drink between 3-6 litres a day, but I am still dehydrated, my fingers are wrinkled like I have had a long soak in the tub and the skin on my face also shows quite clearly that there is not enough fluid in my system. My mouth and eyes are always dry no matter how much fluid I ingest.

We are holding off increasing the florinef for a bit as I got so poorly one week after starting it. I am now around 28 days in and other than looking like the Pillsbury Dough Boy it doesn’t feel like its done a lot . Initially I thought it had made a massive difference as I could bend forward without feeling dizzy, that’s now come back. My night sweats seemed to have stopped, now that’s come back. My heart stopped feeling like it would come out of my chest when I went up the stairs………yep you guessed it!

So today is Good Friday a Bank Holiday in the UK and my parents are up in their caravan, hubs is day off and its nice weather. Ma and Pa came over for a visit and it was lovely to see them. I don’t get to spend as much time with them as I would like. I can’t really travel and my mum is also my sisters carer. We speak everyday on the phone at least twice a day, but its not the same as being together.

My parents took me out today to buy some plants for the garden. Hubs had prepared all the pots on Monday ready for them to be planted up, so the garden has looked a bit weird with rows of empty pots full of compost! It wasn’t actually too busy at the shop and I managed to pick up some trailing lobelia, ( or labia as my husband calls them, its been a standing joke for years after he rang his mother up and told her he had been planting labia’s. I only pointed out his mistake after I had text messaged everyone we knew! He’s never lived it down. Even the neighbours tease him about it! An honest mistake but hilarious), some begonias as the slugs don’t seem to like eating them. I also got some daisy like things – bright yellow, a lovely purple broom and some bright purple plants that I can’t remember what they are called!

I like a lot of colour in the garden as we don’t have a lawn. With us being near Exeter the soil is very heavy and clay like. The soil is bright red and with three dogs running about on a lawn everything would be stained bright red. Plus our garden is north facing so in the winter it gets very little sun so when we first moved in the back garden was like a bog. So we put in decking which is nice and easy to keep clean and the dogs don’t bring any additional mess into the house.

This year I am not growing any vegetables as last year was so disappointing. The runner beans produced loads of flowers and then only a handful of beans, Mollie ate the strawberries and helped herself to the radishes! The caterpillars ate all my salad crops, we also had horrific amounts of black fly. I had never known a year like it for pests and that includes Mollie!

I don’t have the energy this year for doing a lot of gardening and the garden looks so bare in the winter I wanted some plants that would provide some greenery throughout the year. So this year I have gone for lots of flowers and no colour scheme, just lots and lots of colour. Since getting the plants in the pots earlier on today and giving them a good soaking some have already come into flower and the lobelia (or labia) looks like its grown. I now just need to guard them against Frankie watering them and inadvertently killing them off! It maybe good for the tomatoes but the other plants just don’t agree!

 I have been enjoying lying on the lounger in the sun, reading and chatting with the neighbours. So when those plants get going its going to be stunning!

Special thanks to Mum, Dad for taking me to get the plants and to Mum and hubs for planting it all up and making it look great.xx

Where has the week gone?

I am having one of those weeks where all the days seem to have merged into one. I can’t believe its going to be Friday tomorrow. Its seems like since last Thursday all I have done is sleep and stay in bed. I am walking around with my eyes closed as the house is crying out to be cleaned and the washing bucket is limping downstairs on its own accord! Well it will have to wait as I’m really not up to playing the good wife at the moment. Thankfully Hubs couldn’t care less, he’s given the place a quick sweep around a couple of times this week, but as he says as long as you are OK the rest of it can go to hell in a hand basket!

Tuesday this week was very scary. As you may have read in the comments I gave up and took Tramadol. I didn’t know that this can affect the neuro muscular junction (like MG), after I had taken it I kept feeling really short of breath but I kept ignoring it as I was so tired and it wasn’t enough to really frighten me. By 12pm Tuesday I was really gasping for breath like a goldfish that had been removed from its bowl. I had to use my oxygen concentrator and take Mestinon within the hour I was feeling good. My eyes opened up properly, since taking the steroids my bilateral ptosis had been bad, so I was walking around looking like I was half asleep. Hubs couldn’t believe the difference he said my yes hadn’t been that wide open for ages.

My response was very typical of someone who has MG to deteriorate when initially starting steroids. That’s why most MG patients are hospitalised before and whilst starting steroid treatment. I have been extremely tired and weak since starting the florinef. I have been in agony with my neck as the muscles have been so weak. Monday night was so bad I ordered myself a neck brace which has come today. My neck feels great in the brace, my spine doesn’t feel so compressed. My shoulders don’t know what to do with themselves as they have got so used to being permanently hunched up to try and give my neck and head some support! So I hope that I will soon start to pick up and get out of this exhaustion rut.

Whats odd is apparently I don’t have MG so there is no medical reason for my body to have reacted in this way to taking the steroids. Very Bizarre unless in fact I do have MG…………..?

I am currently managing about two hours out of bed at a time at the moment. Even when I am out of bed I am having to lie on the sofa. I like to change surfaces so that my body doesn’t develop pressure sores. That would be a nightmare on top of everything else!

I don’t really know what happened to Wednesday it seems I slept through a lot of it. Thursday (today) is feeling like it might go along a similar vein. I am sleeping OK at night (ignoring Monday into Tuesday) I have no viral illness or any reason why my body has decided to just shut down and sleep. Its all very weird. However if my body is saying sleep it must have its own plan and I shall just listen rather than trying to fight it

Thanks for reading xx