BM 7th week out

[Stace30]

Hi there

So an update to share info/help others/ discuss side effects etc

Its my 7th week out of hospital

Seems longer

Especially when you're stuck in four walls not being able to do much

Anyway so contracted an infection

I imagine it was a uti of some sort but as im not out the house much it was all done for me and they didnt tell me much had a prescription of a weeks antibiotics and seems to be settling

Kidneys burning/sore at times

Ibs is ten times worse

I still cant rest the back of my head/neck/top of my spine back onto chairs/sofas etc as its still uncomfortable/throbbing etc

Its still uncomfortable to stretch/look up/down

Scales seem to tell me ive put weight on but not sure where as i seem to put it on my belly/bloat but everywhere else seems boney

I also still get vertigo when i do to much

Got frustrated with my walking yesterday...

Usually walk to the end of the street and back with someone but sometimes when your feeling ok you get fed up of not doing much and so i thought id get taken for a little drive and walk round shops for an hour....

Probably not a great thing :/

When i left hospital the infectious disease doc said for me to just try and push through stuff and keep moving but its hard when your mind/bodies against you :/...

So i didnt feel great...

I had to link who i was with all the time,

I felt like i was almost dragging my feet at times just as in i didnt feel like i could get my legs up bending them strutting etc,

I had to keep sitting down when i saw a chair; which my back didnt like then helped back up which my back still didnt like,

I was shattered by the end of it and frustrated asking myself...

"Why can i not walk normal and by myself?!"

Im not sure wether its because my bodies still recovering, wether its to do with my head or just because i have ear issues after having an infected mastoid and burst ear drum :/

I know i am very lucky to be here today but you cant help sometimes to just get frustrated especially with something thats so individual and knowone seems to know indepth about as in time scales, recovery etc

Thanks for reading 💋

[StrawberryCream]

It maybe that your higher vestibular balance has been affected especially as you had an infected mastoid. I would suggest that you ask your GP about being referred to a Neuro Otology Clinic (balance clinic) if here is one in your area. There your problems would be assessed and if necessary you would see the specialist physio who would advice you on what vestibular exercises you should do to improve things.

I can fully identify with all your frustrations!

[Stace30 in reply to StrawberryCream]

Hi there

Thanks strawberry cream

After keep getting delayed i have my first checkup with the infectious diseases doc on tuesday so will see what happens there first**

[Jonad724]

Hi, I had VM so not quite the same but I can tell you I was damned angry at what I had been left with and people saying 'I bet you're glad to be alive' really started to grate with me so I wrote this post:

healthunlocked.com/meningit...

which might help, hope it does. I was discharged from hospital unable to walk, they only discharged me because I could stand up (with two nurses holding me) and I suffered long periods of not being able to do anything. I also have recurrent kidney infections too (my latest blog post covers that one). and I have been told my susceptibility to infection can be made worse by having a low immune system caused by tiredness and not resting enough, make sense if you think about it.

The one thing I have found recovering from meningitis is 'pushing on' and not resting when your body says rest is about the daftest thing possible to do. It knocked me back for days on end when I did it. If it was me, I would ask the infectious disease doctor just how many cases of meningitis they have treated which qualifies them to give that advice just to make sure they're not guessing or working from a text book. You'd be surprised at how few cases of meningitis doctors actually see in a career, in fact some never see one. I do know that they are told in training that you should recover in a couple of weeks with all types of meningitis which is rubbish because no two people react the same way to it.

You know how your body feels and your brain and system has taken a massive beating, if you were physically beaten up in the street (heaven forbid) then you wouldn't be trying to push on. If you had a broken leg you wouldn't be trying to walk on it asap so I'm not sure I understand the doctor's advice. StrawberryCream is much better qualified to talk about BM so I'm sure if I'm wrong she will say and I'm happy to be corrected as always.

My humble advice is, give your self a break, you have suffered a major trauma. to the least understood part of the human body (the brain) and your body needs time to recover. What you have been through is a bit like falling out of a first floor window onto your head and if you did that you wouldn't be surprised that 7 weeks later you weren't back to normal, although please don't try it just to see :-).

So I would give listening to your body a try rather than pushing on through it. As a long distance triathlete I know all about pushing on through pain because I train for months before a race specifically to do that. Meningitis is a whole different bag of beans. No one trains for meningitis so when it strikes you're not prepared for it and the human brain is very good at working out what's best for the body. If you feel tired you need to rest. It's been that way for thousands of years even before modern medicine so I would trust your instincts and as my neurologist told me 'own the pain' don't let other people tell you how you should be feeling or what you need to do. The after effects of meningitis are not some sort of mirage or a figment of your imagination they are very real and 7 weeks on from a major trauma I think you're doing pretty well to be honest. Just think of the things you can do now that you couldn't when the BM struck and I hope you'll see what I mean. Sometimes its not about the long race its about the steps you take inbetween.

Good luck and I hope you keep us posted on here as to how you're getting on. We have had different strains of meningitis but not for nothing is this group of pages called a community.

[Stace30 in reply to Jonad724]

Thanks jonad724

Refreshing for somebody to actually know its a major thing and its just time and i agree you can tell the doctors arent sure n everyones different and they are just textbooking you.

Ill have a look at your posts thanks.

Also im not the kind of person to dwell or tell people im ill etc as some people you know do but when people see on the surface that all looks well its frustrating as they dont understand whats still up and what youre going through.

😌👍🏼

[Jonad724 in reply to Stace30]

I know exactly what you mean, sometimes it would have been easier to have had a broken leg, something visible and tangible that you can point to and say, no I'm not ok. Unfortunately though there will be times when you have to say I'm a meningitis survivor and there will be times when I look fine but I'm in agony on the inside. It can be a positive change though, after 5 years away from triathlon to let my brain injury settle down, I came back to the sport and to celebrate 10 years of being a survivor I did my first half ironman, something I would have never done prior to VM because I just never thought that I was capable of completing 70.3 miles of swim, bike, run under my own steam. I've done another two since almost because I still can't quite believe I can do it. The advice I give most to people who are recovering is that I learned you have to adapt normal to something different to before meningitis. As Toni says below it's life changing and it will take some time to adjust and recover but in the end it doesn't have to be a negative change and you will look back in 10 years time and say 'I beat meningitis, I am much stronger than I thought I was, meningitis doesnt define me, it's the way I live my life post meningitis that does that.'

[40tonic]

So sorry to hear of your experience. I am 6 months post VM. I agree with Jonad724 he has been my inspiration on here. I could not walk, drive, go shopping or anything. I realised quickly that on here there are two types of people. 1 push through regardless 2. Rest rest rest.

I decided to be the latter and rest because listening to your body is the secret to getting well. The people that I read about trying to lead a normal life and fight this had more and more symptoms. The ones who rested showed great signs of recovery. This is life changing. I've had to accept and embrace the changes. With frustration but I worked through that with meditation. I mentally gave my self a yeAr of getting through the worst. I can gratefully say I'm making amazing progress. I'm not on medication at all. I do suffer chronic fatigue and as soon as my body shows any signs of pain I immediately rest. Before vm I was running 5km every Saturday, dancing excersising. Working and I have a family. I eat to fuel my body and I've found some excellent supplements no need for medication for me. The key is to remember this is temporarary and focus on the getting better and feeling great again. This has worked for me.

I wish you the very best recovery, take small steps one day at a time. I look forward to hearing about your improvements.

Health, love, peace and happiness

Toni xx

[Stace30 in reply to 40tonic]

Hi toni

Thanks

Its just hard when you have a house to pay for and a job that only pays so much sick pay and an illness that is unpredictable :/

Thanks for readin n replyin 😌

[Annieg48]

If you contact meningitis now and ask for a home visit the CSO will visit you at home, give you a chance to talk all this through face to face and come up with a plan of action with you so you can break it down into manageable chunks. Not sure the doctor is right saying "push through" fatigue - that often makes things worse.

Hope you arrange a home visit - they are so helpful with all the different issues you have. Only problem is, I noticed on the Meningitis Now website that they have taken Home Visits off the page it was on, so maybe you can't get them any more - but do try, they can make a huge difference, much better than on the phone etc. Good Luck

[Stace30 in reply to Annieg48]

Thanks annie

Ill look into it

As much as you talk to people youre around when they dont fully understand the disease its hard 😌👍🏼

[PRae]

Hi, I understand. I am almost four years out. I promise you it is going well get better!😤 You are recovering from such a life threatening infection. It takes some time for your brain to adjust to the assault it just went through. Hang in there. Frustration is part of healing. Listen to your body. Rest when it tells you to rest. You are indeed very blessed to be here.