First checkup after BM

[Stace30]

Wrote it all down as i forget everything but I've still forgot some stuff so after my First checkup im just gonna go over a few things the "infectious diseases" doctor has said;

She said i had bacterial meningitis which probably started in the middle ear and because its closely connected to the part of the head where the meninges are thats where it would of turned into full blown meningitis.

She said most people get a infection in the ear and it will go and doesn't turn into something more dangerous.

She said most of her meningitis cases are kids which she sees often but very rare in adults and she wants me to understand how sick i was.

She said i was seriously ill but as soon as they gave me the right drugs, machines etc my body slowly but gradually started to recover.

She said shes not sure that the fluid/air has gone from my head/spine etc but its something they usually let go by itself and after i see the ENT specialist anything else can be gone over then.

Shes not happy that the ENT (ear,nose &throat) specialist/doctor hasn't followed up yet and seems to think a lot of my problems/questions are more to do with them and so has contacted them so I'm waiting on them still.

Ive had a scan on my lungs which looked completely clear of any infection/fluid and i got shown two previous scans and it shows both lungs collapsed and bar a tiny bit at the top of each lung they were both full of fluid/infected.

Ive had my height and weight measured to discuss on the next appointment.

She said my crp count which is from bloods taken shows infection/inflammation in your body and it was in the red most of the time it was 100 at one point which is to high in itself but then it went to 400hundred and sumat which was wen i was critical and slowly wen down about a 100 a week until it was 85 then finally on leaving hospital it went out of the red and was just 4.

Ive had a blood test to check everything's still ok and that my crp count is still on 4 which will be followed up on my next appointment with the infectious diseases doctor.

She wants me to not deprive myself and make sure i I'm taking tablets for my head, neck, ear pain etc which might be for another year but she thinks theyll eventually subside.

She said if i do something to much/walk to far and get pains/breathless/dizzy/unbalanced etc then I'm to do half that and keep trying,

She said it will be difficult as my body has been through a lot especially from being in ICU as when your in that department because of how critical you are you have to be put through things that are so invasive and takes a lot out of you/your body,

So it will take a while and also because of not seeing the ENT doctor yet it may have a lot more to do with that, thats stopping me from doing things and so it will be hard to do enough as to try and get some muscle and strength back but to not overdo it as to not rest my body/make it worse/become fatigued.

The only thing now is ive been told today my company sick pay runs out and with all my side effects and weakness not getting better any time soon im not going to be able to pay all my bills :/

Im getting so stressed now; im trying to get better and am literally unable to walk far on my own so im totally lost on what i can do... Has anyone else come across this or know of any support advice that there is?

Thanks 😕

[Annieg48]

Sounds like quite a good visit, and referral to ENT positive too. You need to bear n mind what the doctor said about how ill you were and that you have been through such a lot. Gonna need to be patient.

You should be able to claim some benefits? Maybe statutory sick pay? It won't be much though. Also housing benefit if renting and council tax benefit. Check with CAB.

How did you get on with request for home visit from Meningitis Now? They will be able to help too.

[Stace30 in reply to Annieg48]

Hi annie

I know its just so frustrating when everyones at work

You cant do much

Youre frustrated, bored, confused, fedup etc and recovery is rest

Sometimes i wanna just push myself or try to work out

But then it takes its toll on my body if i try and ill be just as frustrated because ill be fed up that i cant do anything

I wrote to meningitis org and now n they sent me links to try and apply for but ive just been so emotional and stressed lately that i havent been through anything

Its all so confusing and stressful to get my head round

Im entitled to ssp but its not even going to pay my means bills

Oh and i havent got intouch for a visit yet as sometimes i just feel daft to feel like this like whats it going to achieve etc :/

Thanks for chatting 🙂

[Annieg48 in reply to Stace30]

I would say that the point of a home visit is to help you bring some order about when you are feeling stressed and struggling to cope with everything. Having someone talk to you at home is particularly helpful, rather than them sending you links etc that you aren't up to dealing with. Home visits are sooo valuable

[Stace30 in reply to Annieg48]

Hi annie

Hope you are well

I think i will in january definitley

Ill keep writing lists of issues/stresses and try to sort something out

Thanks again 🤗

[Looloopops]

Hi there , a lot of your symptoms sound what I had. Has anyone mentioned a CSF leak ? You may be leaking cerebral spinal fluid into the ear . I too had meningitis, pneumonia as fluid was collecting on my chest whils sleeping . All the could have been avoided as the ENT consultant didn't look at my ct properly.

I hope you get help as I can empathise how stressed out you may be feeling health wise and financially. You will have to phone the dreaded Job centre for forms to be sent to you .

Hope you feel better soon ,best wishes Lindy X

[Stace30 in reply to Looloopops]

Hi lindy

Knowones mentioned a csf leak :/?

yes i too nearly got sent home as one doctor thought id just had mastoiditis/ear infection**

[Schmooschmoo]

Hi Stace30, can you get a referral to another ENT dr? I would suggest asking for two referrals and book into whichever dr had the lesser waiting list. Because you had a middle ear infection which caused BM (I'm guessing you had pnemuniccocal meningitis?), i always Er on the side of caution as, although it is unlikely, you may be a candidate for getting BM in the future should you suffer another ear infection. Do you have a desk job? Are you able to get someone to drive you to work & negotiate 1/2 day duties? Most BM survivors (and I call you a survivor because BM results in death without fail if not treated in time) can sit for only short periods at a time & so jobs where you need to be on your feet may be nearly impossible to do. You didn't say his long you have been in recovery or how long you were in ICU? If you GS score was low on arrival at ICU your recovery in ICU and at home is much longer. I hope you can negotiate a return to full time work program with your employer. BM is such a serious illness. Everyone know how serious a stroke or heart attack is however BM can be just as fatal. Your experience may be a good opportunity for your employer to learn more & perhaps you can educate others on the illness so they can have a better understanding. I wish you all the best and hope that the ENT dr can help you further. (Although the infectious diseases dr should be the supreme specialist in your case). X

[Stace30 in reply to Schmooschmoo]

Hi there

It was bacterial meningitis and i think they said it was group A streptococcus.

My job is a visual stylist in a fast paced retail environment so im constantly on my feet and moving, lifting etc

If you go on my page and look through past posts all the other details are there, i only came from hospital in november.

I was in wards/parts of critical care for about a week i think.

And yes its frustrating how serious it is but people no nothing about it.

To be honest as good as i thought the infectious diseases doctor was i now feel full of qs and comments etc after coming away as she feels a lot of things are to do with the ENT specialists now.

I just feel full of emotions constantly :/

Thanks for chatting 🙂