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.

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6 thoughts on “Another hospital appointment….

  1. hey hun,
    Sorry to hear that your new physio isn't as good as we first thought! It's awful when you think you have finally found someone who understands, only to be corrected further down the line! Sounds like you have made some real progress with the POTS over the last year or so…don't be so hard on yourself. The fact you are managing to get into an upright possition at all at time is a big breakthrough. Hop to catch up with you soon for a proper natter…my sleep pattern is buggered at the mo so am using the internet at totally unsociable hours!

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  2. Hi mk

    i would listen to you body, thats a lesson learned over the years. when i was a teenager i kind of knew to keep my body moving otherwise the symptoms would be really bad, (at the time i didnt know i had pots,) now everything has changed. if i overdo things, the symptoms have a flare up. very foggy this morning hoping im making sense.

    the traffic, school holidays. when the kids are off school i always sail through to appointments. x

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  3. Hi Em and Minxy,

    Congratulations Em on getting the ruby slippers! Lucky girl.

    Yeah its a tad disappointing that Bev seems to believe in the Levine protocol for POTS – but shes a physio so I can't expect any different.

    I listen to my body and I know what I can and can't do every day. Go beyond that and I am a disaster area. Even one step more than what I am able to do has dire consequences. At least my GP and consultant support me in that. It would be far worse if I was the lone voice.

    Thanks for reading and leaving comments I really appreciate that!

    Rach xx

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  4. Hi Rachel .. sort of progress – at least you must do what you need to do and can do ..

    Hope you're able to enjoy your back yard and flowers .. the honeysuckle will be lovely sometime soon – thank you neighbours for letting it hang over!

    Cheers – hope you can enjoy the weekend with hubby and dogs .. Hilary

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