Struggling to recover: Greetings, I am in the... - Meningitis Now

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Struggling to recover

Sulane64
Sulane64

Greetings, I am in the 5th week of vm, 2 weeks spent in the hospital & back &forth to DR. & er with limited recollection of events & treatments. My daughters 25 & 22 were solely responsible for my in & out patient care. Prior to this illness I was the biggest force going in our lives. I was starting a holistic floral essence business, worked 40 + hours at a garden center , taught yoga & was coming out of a sadness over a 5 year relationship breakup. I was in full swing for a fresh start . My symptoms began with a routine physical elevated white blood count, the nurse thought we should inquire further. Next week while working i started to need to sit down in the shade (unusual for me with the sun out), then I was confused about time, I left early & by the time I got home, I was overcome with neck ,shoulder & upper back pain. I began to feel feverish as well. I crawled into bed. Waking up around 11 , unheard of for me, I had a fever of 101 was in considerable pain & the light hurt my eyes. Lucky for me I had a physical that day. My daughter had to drive me. Upon check in I told the nurse, i could not have the physical i was sick .The RN examined me they said I had heat exhaustion, due to the nature of my work. I went home, That day was torture, my neck, shoulder & back were searing with pain, slowly I could not have the curtains open. My confusion became overwhelming, I kept asking the same questions , do i feel warm? Do I have a fever, should I go back in? During the evening my fever went to 102. The next morning I went into the hospital they wanted to do a spinal, but I refused, I was delirious & my daughter had no idea of the severity, I just knew the spinal was painful. Later that evening I passed out from the fever & pain & in we went, I agreed to have the spinal, which confirmed vm. I was hospitalized for 8 days, 5 of which i could not have the lights on, I had multiple iv's. was so disoriented & in such a state of confusion, with searing headaches. Finally I was able to come home with a pickline 6 days ago. It came out. I am on 3 meds. The rough part is nothingness. the waiting to get my self & strength back. It hurts & I have no concentration to read, even simple yoga postures are out of reach at this time. I am so exhausted from attending a friends wedding, that I was to do the garden & flowers for. I am grateful to be alive & that I have my daughters at my side & so much more, but what happened? How did i contract this? I can't work for 2 more weeks ( I think my Dr. is letitng me down easy & it will become longer) if at all this season, will i ever have the stamina & strength to live as I have?

2 Replies

Hi, I had near fatal VM in 2002 and I'm also now a Community Ambassador for Meningitis Now so hopefully I can help you with some insights.

VM is not usually contagious, it is usually triggered by a virus already present in your system. In my case chicken pox and a very low immune system due to over-work and training for triathlons on top. I had chicken pox at 31 which nearly finished me off so this virus is not one to be messed with. You might find this link useful: meningitisnow.org/meningiti...

To be honest, 5 weeks into your recovery is really no time at all. You're lucky that your doctors seem to recognise how serious VM is as most don't. Prior to VM I was living life at 100 mph, training for a sea based triathlon and generally being a good Dad and husband (well I hope so). I'm afraid VM can take some time to recover from and you may have to adjust what 'normal' means to you, the life you had before may not be the life you have after VM. Not necessarily a bad thing, just different, but it is still a life. I wrote blog posts about my recovery, just click on my profile and then click 'posts', which may help. The one I remember most is 'Oh no it's Angry Dad' where I described how yes I was grateful to be alive but damn angry at what the VM had done to me. People would keep saying to me 'oh I bet you're glad you survived' well yes I was (am) but that doesn't stop the grieving for the life I had and what I felt VM had robbed me of.

When I say it's a different life, and this isn't necessarily a bad thing, what I mean is that you may be able to do things you couldn't do before or do them just differently. Prior to VM I didn't think for one moment that I could complete a Half Ironman Triathlon (1.2 mile swim, 56 mile bike ride and a 13.1 mile half marathon) but I have completed three plus more triathlons than I can remember. My first was is 2012 to celebrate 10 years as a survivor and granted my daughter (who is a nurse) said to me 'let me get this straight, you want to celebrate almost dying by nearly killing yourself'. She always has had a way with words!

In a world where we are used to things happening quickly VM is the one disease that snubs its nose at that. If you rush your recovery it will come back and bite you and patience is something you have to learn to be your best friend. Rest is really the only way to recover. I tried to do 'normal' things 3 days after being discharged (I was only in hospital for 3 days and was discharged 1 day after almost dying) only to be rushed back in to A&E with no discernible blood pressure and heart rate dropping through 27. I was then off work for just under 6 months and had to have 5 years away from endurance sport to allow the after effects and acquired brain injury settle down. They didn't and I was told after 5 years if they hadn't gone then I would live with them for the rest of my life.

I hope this helps and please PM if it would help and I can share my email address with you if you would like some additional support. Thanks, Jonathan

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

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