What the hospital said..

I've been in and out of hospital quite a bit over the past month or two for various different reasons, so I thought I'd keep you all posted on the latest.

I've been having seizures and fits for a good three years now, and they still haven't identified what type of seizure they are, or why they happen, which is frustrating because they are one of the most concerning symptoms and I'm always worried when and where they will happen as there are never any warning signs so I have to be so careful, especially as I almost always drop unconscious and have even stopped breathing on a few occasions. I'm probably going to be re-referred to the neurology department for a third time, but I'm likely to be waiting for about a year as neurologists are always in such high demand, but I really hope I'm on the path to discovering what is going on once and for all! (I can only hope) They are almost certain the cause is neurological at this stage, so it's going to be a process of elimination which could take a while.

I finally had my tilt table test done after over a year of waiting (which is ridiculous!) I'm going to put a more detailed write up about it in the next few weeks as part of the 'my *insert medical procedure here* experience series, so look out for that if you're interested in reading more about the tilt table test and getting a dysautonomia/POTS diagnosis.

One of the new Doctors I have seen, looks so much like Doctor Christian - a British celebrity Doctor who appears on embarrassing bodies, the show definitely not for the faint hearted. He seems really nice and he is keen to solve many of the questions that have been left unanswered for too long, which is re-assuring.

On the way home from hospital / out of spoons! / cuddles from nurse B!


I also made some new friends down the hospital, a lovely elderly lady, and a cute little old man who made my day by being so cute and kind. I was in a waiting room for an hour and a half waiting for bloods and it was like a party in there with all the old people singing, chatting away, and laughing. When you get to OUR age (and I say that like I'm an OAP because I honestly feel like one) going to the hospital is a social outing so you have to make the most of it. Whilst I was sitting there, I was looking around me and I was thinking to myself that most of the people there are likely to be very unwell, dealing with who knows what, yet their spirits were high and it was more like walking into a bingo hall than a hospital. It made me feel happy and inspired. Every cloud has a silver lining and being reminded that smiling through your troubles is always the better option was mine that day.

How have you all been doing? Have a great weekend guys!

Hayley-Eszti
xxx


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22 comments

  1. I like that your new pup friend is there to give you comfort. Hope you find out helpful info and that the testing will help narrow the medicines which may help.

    We recently asked for retesting on my daughter with the CVS, as she's been having more occurrences than normal, and hasn't been retested for awhile. We have to monitor and ask for these things and I keep notes about symptoms. It's never-ending.

    Wishing you to feel better, Hayley-Eszti!

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    1. I can really sympathise with you, it is never ending and it can be overwhelming at times. I hope your daughter is doing ok though?
      Hugs to you both x

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  2. Hoping they find a cause for the seizures, sounds awful. Neurology is prob the most in demand sector hope it won't take forever to be seen.
    Your new friends sound adorable! Take care x

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    1. Thank you! I know, the department covers so many things so I understand why it takes a long time, but I'm hoping when I finally get there it will lead to something at least.

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  3. Aww the bit with the old people is so sweet! I REALLY hope it's discovered what's wrong SOON. I find it appalling that waiting can be as long as a year!


    xo
    www.thisisfrancescarose.com

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    1. They were so lovely, they made my day! I know it is ridiculous sometimes how long people have to wait

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  4. You cuddling your dog is so cute <3

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    1. haha thanks! He is so cute, he knows when I feel poorly

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  5. Wow, your doctors are looking for the reason for your fits & seizures? Mine just ply me with baclofen, which is all very well but it obviously doesn't fully control the....well I call it spasming...
    I don't faint though (although the breathing thing I am familiar with lol).
    I hope they find out what is causing it & that it is something separate to the M.E. That they can actually help you with.

    Sally

    http://www.wheelingalong24.com

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    1. They are only investigating because I've really pushed it because my seizures are so bad, I've seen a new GP whom I think is going to be a great help with getting to the bottom of things.
      Thank you Sally, and I hope you are doing OK! xxx

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  6. Are your seizures like epileptic fits? Fingers crossed you get some answers. Stay strong.

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    1. Very similar, but I don't have epilepsy. They look like epileptic fits and have similar symptoms though. Thanks Lucy!

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  7. Seizures eh? I have heard those happen sometimes with M.E. - Horrible horrible that you have to go through that. I love how you were able to appreciate the older people at the hospital. Sometimes people are amazing despite what they are going through. I think I can be pretty depressing and cranky a lot of the time feeling so sick. Interesting that you are dealing with OI stuff. It took me until this past year to actually try more than stockings and extra fluid and salt for the OI. I'm curious to hear what you will be doing.

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    1. They are so horrible and can be scary to not know when they might happen as you can probably imagine. I do love being in the company of older people. I lost all of my Grandparents at an early age so I miss not having older people around.
      I'm going to discuss what my care plan and coping strategies will be with the specialist, but I'm keen to give stockings a go as I've heard they can work well. Take care!

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  8. Wouldn't it be great of your puppy, I forget his name, could eventually alert to a seizure coming on? Sleeping with you and cuddling with you, he loves you already and maybe he will know. I know there are trained dog for that. Well, other than that, you have shown us the bad side of National health care. I do remember that from when I lived in Sweden 50 years ago. It was difficult there then, I don't know what it is like now. I love the idea of everyone having access to health care, paid for by income taxes, but I realize it does not always work and waiting lists are long and so is waiting time.

    I had to giggle at the senior folks looking upon their hospital visits as outings. We do the same. You may have noticed that I call our trips down the mountain to Bakersfield: Road Trips. They are really trips to see doctors that we don't have up here. Fortunately, my main guy is here in town and so is the lab for blood work. It is so true, for us it is an outing, and sometimes even a fun one. Sounds like you connected with a great group of oldies.

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  9. I am so sorry to hear you have been struggling so much lately and not feeling well. The waiting game is definietly the worse. I can sympathize for you. I had the waiting game for 3 and a half years before my neurological diagnosis was made.. It can be so frustrating because things are so similar and to make sure they get it right they take their time to cross all off the list it really couldn't be.. Which is a good thing but makes it so hard with the unknown. I will be praying for and thinking about you for sure please know that. I will keep checking back to stay up to date. If you ever need to talk feel free to email me. I feel like I can relate well to what you are feeling and will be a sounding board whenever you may need. Keep your head up and spirits high. It's hard but it's worth it. There's no telling where the end will be but once you get there I promise feeling better is in your future. It has been for me for over a year now<3

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  10. So sorry you have been have seizure recently. I never had this symptom so I could only imagine. I hope those professionals can really do their job!
    Beautiful/cute pictures of you and dog! Nice weekend!

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  11. Oh, I hope you'll get the answers you've been looking for. Take care of yourself sweetheart.

    /Avy

    http://mymotherfuckedmickjagger.blogspot.com

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  12. I hope you get answers soon. Old people can be lovely, its the grumpy ones you need to avoid though!

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  13. I do find it awful that waiting lists are so long, but hopefully you will start seeing some results soon doll! And I love the older generation, nothing seems to ever get them down.
    xo

    Amy
    i-am-adorkable.blogspot.co.uk

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  14. I hope you find the cause of your seizures soon xoxox

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  15. Seizures are very concerning, I hope you get answers. Also, a year for a tilt table test? Ridiculous! My tilt table test had some severe repercussions. I hope your payback want too bad. Thanks for reminding me this morning to smile through the illness- I needed that. X

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