I felt unsupported. I'm new here

I feel as if I have come a long way now and going to see my Doctor today with a view to a phased recovery back to work. A little harder for myself as I am a Fitness Instructor and 59 (age is no barrier)

I was found home alone after a day of lying in a coma. The Police broke in through my bedroom and alerted the emergency services. My husband was in Birmingham but had alerted a friend to try and get in to our house, but I had locked it from the inside. I would normally ring my husband at 8:00am every morning so he was suspicious why I had not rang him that morning and alerted the police.

I had bacterial meningitis. I had no forewarning. One minute I was fine the next I could not remember anything for 4 days. I had the various tests, lumbar puncture, CT scan and blood tests and was in hospital over Christmas 2016. Any longer at home and I would not have survived.

I was discharged from hospital with no follow up appointment. I thought as soon as I got home I would be back to work, but, no way was this happening. I had damage to my eye and was having double vision so could not drive. I also had excruciating pain in my upper back and chest.

None of the GP's in my practice could diagnose what this pain was and I felt I was on my own researching and eliminating everything myself. I felt in the place where I thought I would never be able to teach again, drive again and walk in a straight line again. After 7 weeks I took the bull by the horns and booked an appointment with a neurologist privately. He answered all my questions and was able to diagnose that my fourth cranial nerve had been damaged in my brain and that most people get their sight back to normal in a few months. He also informed me that the pain I was experiencing was nerve pain and not muscle pain as I was being treated for.

Living in the unknown gives us so much anxiety. If there is anyone out there who has these symptoms I do hope this helps you.

When I phoned Meningitis Now I found the support I needed. It is unfortunate that I did not find the Health Unlocked forum until just a couple of weeks ago as I think it is amazing in its support for sufferers. I have also had a discussion with a Support Worker in the community who was very helpful too. It is just a shame I did not know about the charity earlier.

Thank you Meningitis Now for all your support and help.

3 Replies

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  • I can understand how you feel unsupported. My daughter had bacterial meningitis in November 2016. After 11 days in hospital she was discharged with little info and support. She went to see the GP after 6 weeks, but they were unable to help with information on her recovery and basically said wait until her follow up, which was 3 1/2 after in February.

    The follow up was mainly concerned with immunology and blood tests on why she may have caught it in the first place. The consultant didn't physically examine her and seemed unconcerned about her left sided weakness and vision loss in one eye.

    She has been referred on to the ophthalmology department, (but no appointment yet now 6 months on) and the immunology centre (no appointment yet. The GP has also referred her back to the medical Dr's about her left sided weakness, but I'm not sure if that will be any help as it's the same consultant as last time.

    We've found this site very informative and supportive as well as the charities Meningitis Now and Meningitis Research.

    It seems like if you are an adult (my daughter is 23) then you are discharged with little follow up and you have to do all the work in finding help where as if you're a child you get follow ups and tests for sight, hearing etc.

    I hope your recovery goes well and you're able to get back to doing normal activities soon.

  • Hi you sound like me I was discharged 3 months after going down with BM I was given no information at all I had to start digging a round on the net the trust or now as it's called where good on physical things well more than good they where great But when it came to doctors I was just passed around to different onesNow I had lost my hearing and had no balance to start they gave me hope my hearing would come back lol They told me after 2months of phisio I never walk again as I had lost all my balance so thank god for mobility scooters any way I will not bore you but it seems to me patients leaving hospital know are getting as much info know as I did 14 years ago NOTHING such a shame as they saved my life so I cat moan to much

    Good luck to you and all

  • Yes I agree it does feel like after I was released from the hospital like settings and got done with a couple months of home care that. I was dropped like a hot rock into the abyss of the unknown relatively alone and confused and needing support from some where. For the emotional part. And the continued physical difficulties. HealthUnlocked is a wonderful resource it's been very helpful and doesn't require traveling here and there near and far that i don't think I could handle at the moment both $$$ financially and physically., Facebook and the internet and websites like these are so valuable. Thank you for listening 😊❤️. I have been having such trouble finding homecare aides to come and help me where I need it. Such as transportation and light housekeeping that I just don't have the energy to do. I have some funding from a disability agency and just at the wrong moment the funding was cut in half so I went from 40 hours a week to 15 hours a week and it was nearly impossible to find someone to come when it was 40 Luckily my aging parents live close by or I'd be really stuck I went from.realativly independent 9 months ago able to drive and get around to totally dependent and having a very hard time functioning at all. This stress is something I don't need and it really doesn't help the headache level. I'm just really glad I found this sight to let off a little axiety and find my fellow survivors. 😊❤️Thanks Rebecca

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