Very low and fed-up

I was admitted to hospital last June with Meningococcal Meningitis (Scepatcemia) and am really struggling with recovery. I spent 2 weeks in hospital and have no memory of the first week at all - the second week and first few of being home are still quite fuzzy if I'm honest. I have a very supportive husband and daughter who have both been through so much - but I do feel so guilty for putting them through so much especially as they both thought I would not survive this horrendous illness.

Almost 12 months on and I still get very tired very quickly from doing the most simplest of things, I have ongoing pain in my neck and lower back, short term memory problems, issues with my eyesight (which means that I need to have treatment which is going to reduce my vision). Since having meningitis I also struggle to keep my hands and feet warm which my GP thinks could be related to the sceptecemia. All in all at the moment I feel very lonely and frustrated and feel as if everything is an uphill struggle.

I have been in touch with the Trust who have been amazing, and only yesterday I saw Ffion who suggested that I look into this website - hence my post today. I have also accessed counselling last year via the Trust and this ended in January.

Does anyone else feel like this? I keep getting suprised glances when I tell people that I am still recovering - your home and look fine, so therefore you're well is the assumption people make. Has anyone else experineced this and if so, how did you deal with it? I have a constant battle with what my head tells me and what my body will tolerate/do - I may think ok today I feel fine so I'll go and do the shopping, housework,garden etc. Then my body starts to ache, I get really tired and end up looking and feeling awful. Is this just me?

6 Replies

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  • hi soxy, i'm sorry to hear you've been so badly affected by this awful disease but take heart you are not alone, i had viral meningitis in january and still suffer with headaches, dizziness and terrible fatigue. my head tells me one thing and my body says another. it's very frustrating and i'm constantly having to explain i cant manage something and being told "but you look really well" i sometimes wish i could bandage my head!!

    the viral strain is quite readily dismissed as nothing but a bad flu by many medical professionals i've met so i have also been very guilty because i feel like i should be over it by now and really feel like a burden. you've had a really tough time of it, get all the help you can and give yourself time.... the best thing i've done is contact the trust as even though they cant take away the symptoms they have really helped me come to terms with the way life is at the moment... best wishes t x

  • i so agree with everything you have said .... i am just recovering from viral ... was in hospital over the easter period also felt so bad for my famil everything i am put them thropugh this past month os more ...my consultant rung with latest blood results and said it at long last shows the viral has left the system (this was yeaterday) and it will now be a long road to recovery .... so i sppose i have been quite lucky my doctors are taking it as serious as it is xx i have been signed off work for another month to then go back to gp to see how i am .but i do feel like i should be over it by now up and about etc .... i dont really have any family supposrt my elder sister is very busy with her family, my mum does nt think its all that serious so its just me,my kids and their father although my work friends have been great .... do you get mood swings ?? at the moment one min i am smiling the next i feel i want to kill someone then i cry cos i dont know why !! i am going mad !! and the pains in my head,upper spine (not inbetween lol) and my lower spine is just awful ! Does anyone suffer with itching after this illness ? my spine and entire head after concentrating on something for a few mins or more is so itchy

    i can move around the house for 5-10 mins then need to lay down for 30 mins lol its madness , i feel so lazy but just cant do anything about it ... has you appetite gone down ?? i hardly eat anything now

  • Hi there -so sorry to hear of your meningitis trauma -I had the same -meningoccocal septicaemia in Jan 2008 and have and still experience all the symptoms you talk of.It is on eof the most serious types of meningitis and the septicaemia can do a lot of damage,which may,as in my case be hidden.Thankfully I did not loose limbs or suffer loss of sight ,nor did I loose my fight tgo live -I was on life support 9 days,then in hopital for a month.

    Although I have been taken very seriously since,many of my symptoms have been blanmed onan M.E replapse(have had 10yrs) and few on the Meningitis,

    Only now almost 5 yrs on have I been referred to an endocrinologist,who think the meningitis may have damaged all my glands -thyroid,pituitary and adrenals - possibly explaining my chronic incapacitating fatigue -I am on crutches a=nd wheelchair due to this and the 24/7 dizziness due to damage to my inner ears and balancesystem.

    I too look a picture of health ,but at least my crutches point to some problem!But I totally understand how you feel,when you feel awful,yet people say how well you look and that you m,ust be recovered,back at work etc!!

    The MT do a 1-2-1 buddy system which will match you up with a person who has had a roughly similar meningitis experience -this may be a help to you,in addition to the counselling you had.I now volunteer with the 1-2-1,so happy to email,phone or write to anyone.Think though you need to go via MT helpline as they can then match you with someone similar or perhaps with someone who is local.I also had counselling,which I am so so grateful for -It really was a life line to me as I went through a dreadful period of depression,anxiety and moods going up and down -crying one minute and wishing I had slept away,the next feeling guilty for thinking this,when others loose their lives,next feeling elated and so happy to be alive!

    I have found different ways of coping with the aftereffects -cold hand and feet - little hotties hand warmers ( activated charcoal which you shake and put in shoes -I use hand ones for feet as they work out cheaper and seem to be better than the feet ones!You can get in bpoxes of 40 pairs on amazon and they wotk out about 40p a pair - wonderful as my feet are like iceblocks even in summer.

    Short and long term memory issues -I have started a braintraining programme through website called lumosity.com.It does cost about 4.99 a month,but I am soo worried about my memory I decided ,just 2 weeks ago that I need to be proactive and work on trying to re wire my brain neurons -this is totally possible and how anyone with brain injury re learns.When I came out hospital I had forgotten how to use the computer,washing machine,tv remote and mobile and also all my passwords -thankfully had most in a notebook!

    Unfortunately ,in this country there seems little or no follow up after Meningitis,unless you have very serious after effects.So we need to be strong and be kind to ourselves and try to keep positive.I now have come to acceptance of what happened(and also my other chronic illnesses).I acknowledge my deficits ,while also trying to improve themeg memory,sleep disturbances by using herbal aids,migraines by taking preventative medication.However to come to acceptace ,you first have to go through a grieving process for the life and health you have lost and try not to worr=y about when ,if or how long it will take to feel normal again.This can take a very long time and a year is early days for you.Hopefully you will be one of the lucky ones who makes a full receovery,though from reading the posts here its clear that many still are in compromised health long after.

    So ,hang in there Soxy and all the other posters!One thing we all can do is help each other through -whether by taking time to post on a forum,emailing ,writing ,phoning.Unlike folks who havent had M ,we can all relate to what others are experiencing and saying.

    Would love to hear from you as 1-2-1,but if not wishing you all the best and hope that you find the right support to carry you through your future.

  • Thankyou all so much for your replies - it has helped to know that it's not just me. I'm not having a good week this week but I do know (whilst at time get very frustrated) that I have to take each day at a time. It doesn't help that at the moment I'm battling my way through filling in benefit claim sorms etc, and that I also havbe other health issues including type 1 diabetes to cope with. I have felt very overwhelmed by it all this week :(

  • Hi Kel80 & Daffodil - so sorry for not reply to your posts sooner, I needed time to read them and take in your comments (my brain doesn't like reading much at the moment).

    Anyway, yes Kel80 I do get mood swings and I have found that I am no longer as patient with people as I had been prior to the meningitis. I find it really hard when I feel that someone doesn't understand me and I then get really frustrated with them and me. The worst is when I try to explain something and end up totally going around the world before finally getting to the point.

    Similar to yourself it is just me, my husband and daughter, and when I was taken ill last year they only had each other to rely on which I know my daughter found quite hard at the time. As for my appetite when I came home I barely ate anything and have found that foods with very strong flavours/rich sauces make me feel quite sick. To be honest I was only eating bland foods for quite a while - it is improving but nowhere near how I was.

    Its good to know that your doctor is taking you serious and supporting you xx

    Hi Daffodil - similar to yourself I seem to have a lot of hidden problems as the result of the septicemia which have presented themselves in a variety of ways. I am very greatful to still have all my limbs, however it is very difficult to get people to understand just how serious and damaging Meningitis actually is, and similar to yourself I have another medical condition where my GP has blamed this rather than the meningitis for a lot of the symptoms/pain I currently experience. On the positive though, after a run in last year where I got extremely distressed I do think people are beginning to listen, and finally it is not being diabetic that is causing all these things - as my diabetic nurse said last week my body has gone through an awful lot over the last year and I have had a life threatening illness. It is going to take time for me to recover.

    Thanks for your advice about getting hotties for my hands and feet from Amazon - I will look into this a bit more and probably get some soon. Even though the sun is shining my hands and feet are freezing!!!

    You arre right about accepting what has happened - this is where I do think I am struggling at the moment. Today is a new day and this is a new week for me - last week was awful and I felt very down. I've got appointments coming out of my ears at the moment so am having to write everything down :)

    Thankyou Kel80 and daffodil for listening and replying xxx

  • sorry for late response , i find it very difficult to look at a screen .. some days is not to bad hence my quick post today .. i never had septi but my hands and feet are always cold even in this hot spell we are having ... also if i hold my arm up for 30 seconds or more it goes very numb .. hopefully you have found a solution .. if there ever is one i am struggling .. really struggling .... upper spine and lower spine (the middle is fine lol) pain can be so intense ... the noise is still effecting me ... my sleep has gone from needing 12 hours or more to 3-4 hours if i lucky ... cant eat chocolate .. normal things is just not normal anymore

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