Bacterial Meningitis - 1st Anniversary

[StrawberryCream]

Hi. I contracted Bacterial Meningitis in May 2011. I was admitted to hospital unconscious and have no memory of the day and my memory has been totally wiped for at least 5 months before (retrograde amnesia). I spent 3 weeks unconscious and ventolated and when I came out of the coma I had post traumatic amnesia. I then spent a further 3 weeks on High Dependency wards and when I eventually was discharged I was extremely weak and unbalanced and therefore supplied with numerous aids. I am a single parent of a gorgeous son age 6 yrs. He has been hugely traumatised by his fear that I would die and leave him and what he went through while I was ill. He was not allowed to see me for the 3 weeks I was unconscious because I was the only one with Parental Responsibility to give that permission. One day I just didn't turn up at school to pick him up and as he was not allowed to visit me he didn't really know for sure where I was and if I had just gone off and left him! He was looked after by various people including being taken into Foster Care. The reality is I am 'lucky' (I hate that word) to be here as I suffered a severe brain injury and everyone was told it was most likely I would die. My frontal lobes have been significantly damaged and although my general intellect is intact I now struggle with balance problems, memory loss, difficulty understanding and processing information, being an emotional wreck, prone to depression, getting angry more easily, most likely epileptic (I am on anticonvulsants), have a sensitivity to noise, some hearing loss and deterioration in my vision etc etc. Because I now look OK on the outside everyone expects me to be back to my old self but the invisible damage to my brain means that this is far from the reality of how I am and the struggles I now have managing day to day life with my son. How can my son understand how and why I have changed, if the adults don't get it that I am not the same person or mum anymore. I feel immensly guilty about what my son went through and that I can't do all the things with him that I used too. I have had to piece together what happened by accounts from other people. I understand that I had gone to pick a foster child up from a school at 3 p.m. and because I was being sick I was in the staff loo. The school staff did not realise I was seriously ill, far from compus mentus or that I was experiencing all the typical symtoms of meningitis eg severe headache, not being able to tolerate lights, being confused etc. Fortunately another parent/friend who I had apparently contacted to collect my son from his school (as I was not going to get there in time because I was being sick) became concerned when she had not heard from me by 6p.m. She and her husband came to the school (which had nothing to do with them or our children) and immediately realised I was seriously ill and suspected meningitis. The school had not called an ambulance because they said I didn't want one - how long were they going to leave me in the staff loo??!! The school staff did not realise I was not able to make appropriate decision about needing an ambulance. My friends called the ambulance. By the time I got to the hospital I was comatosed with a GSC of 5 which then dropped further. I currently still suffer with residual effects. It is this month, a year on, and I do not know what the future will be for me and my son. I have always worked but at the moment have not been able to return to my job which frustrates me enormosly - that something I didn't cause myself has completely turned life upside down. Becasue it is my frontal lobes that are damaged and I can still walk, manage my own personal care (and my sons) etc I also seem to fall into a benefits gap as most are measured on severe physical disability!

Currently I am extemely anxioius about Sunday 27th May, the day my life was turned upside down and is no longer the same. I am not sure how to manage the day and would probably prefer to dissosociate and curl up in bed but I can't because it is a no school day and I will have to look after and if possible entertain my son. I also worry that on that day even if I try to focus on the positives e.g I survived (but the double edged sword is I'm brain damaged)!, I will most likely be prone to being tearful and easily becoming inappropriately cross. I seem stuck with feeling upset, angry and guilty about what happened to my life and the effect on my son and struggle to move on.

[sorba]

Hi I had this type of meningitis more than 20 years ago and was a lone parent like you and very worried about my daughter's future. luckily I made a good recovery but there are some problems. My best advice is to say that if there is something essential that must be done, and you can't really face it say to yourself 'I'll do it for just 5 minutes', then chill out. Hope you get better, Sorba

[StrawberryCream in reply to sorba]

Hi. Thanks for your advise. I often do struggle with not being able to motivate myself to even attempt to get things done so maybe your small step of do it for 5 minutes then chill out will be a good thing to try. It is good to hear from someone who has also experienced the worries about being a single parent and being responsible for a child. Because I am not severely physically disabled, do not have a partner or extended family I have had to embrace the slow personal recovery as well as resume a full parenting roll. It has been extremely tough. So are you saying that a few years down the road your concerns for your daughter lessened as she was able to recover from the impact and trauma's of her mum having meningitis??

[sorba in reply to StrawberryCream]

yes, I think that my daughter recovered pretty well, took her GCSEs, A levels and went to Uni- but I'm sure it was an experience she won't ever forget! She is now a mum herself and is obviously sometimes anxious about her own daughter contracting it, best wishes Sorba

[StrawberryCream in reply to sorba]

Hi Sorba. If you don't mind me asking - how old was your daughter when you contracted Meningitis?? It is reassuring to hear that she academically was successful. How lovely that she is now a mum herself, and you a grandma (sorry don't know what word you like to use), but I don't doubt that her experiences as a child mean she is extra vigilant as a mum now herself. My son is a bright boy but at the moment prefers to use his brightness to convince the school he can't do things rather than show his true ability. He experienced early trauma's and losses in his life and then the trauma's of my meningitis so I hope at some stage he does decide to work to his ability and possibly in the future decide Uni is for him. I don't want to push him but I guess his choices and options are greater with academic qualifications. It is a tough world out there to find work. And I guess for us with residual damage from the meningitis to return to employment is also limited or not possible. I am wondering if many people post Bacterial Meningitis successfully return to work or find alternative employment and successfully manage to stay employed. At the moment I have not worked for a year but dearly hope I will start my job again and be able to cope with it. Take Care. StrawberryCream

[sorba in reply to StrawberryCream]

Hi Strawberry Cream- my daughter was 16 and in her GCSE year when I had meningitis, she was the one who had to summon help, but coped brilliantly.

With regard to work I worked on and off as a supply teacher for a few years, but eventually found a part time job as a literacy adviser in a college where I could select my own hours and stayed there for 12 years till my retirement a couple of years ago.

Perhaps you could get some advice on a part time course to do at a local college or the Meningitis trust might help you with some counselling, good luck Sorba

[StrawberryCream in reply to sorba]

Hi Sorba. What a remarkable daughter you have to have summoned the help for you and to have managed to put things to one side and be successful in her GSCE year. It is encouraging to hear that you returned to work as a supply teacher and then a literacy advisor. And you were clearly successfully in work for a remarkable number of years. Definately makes my goal to get back to work more encouraging. But I do recognise I am not ready yet. As regards counselling - Last week I started sessions funded by the Meningitis Trust. They have been such a brilliant support. On Tuesday we have a Street Party to celebrate the Diamond Jubilee. My son I am sure will have loads of fun but my focus will be on giving out some Meningitis Trust info and seeing if I can get some donations in the collection tin. Tnanks StrawberryCream

[Karl723]

Hi

I had bacterial meningitis in sept, I am struggling to cope with all of the same effects that you are having. I'm a serving soldier but not allowed to go to work n probably getting discharged from the army in the next few months. I suffer also with fits & seizures which might be epilepsy too. I get so down & fed up because I'm nowhere near the man I used to be

[StrawberryCream in reply to Karl723]

Hi. Bacterial Meningitis is certainly devastating to lives. I still grieve for the old me as I was happy and enjoying my life and feel enormously angry that life has been so changed through no fault or doing of my own. Not knowing where the future lies and feeling that decisions are out of our control and down to other people is incredibly hard. I have friends who were in the army and I know how serving in the Army wraps around your whole life and to be facing being discharged from your chosen career must be beyond adequate words. It is also not knowing how much recovery will take place and having the patience to find out as it is such a long slow process. I guess your have had your driving licence revoked at present? I only recently got mine back but it is a 3 yr medical review licence because of the concern re fits. Frustratingly I never had a visible fit but a neurologist assumed I was maybe having subclinical fits because I was not waking from my coma. He then felt his diagnosis was confirmed because I then awoke from my coma shortly after starting on anti convulsants. However a EEG post discharge showed no epileptiform activity but because of the extensive frontal lobe damage and deep seated lesion the neurologist thinks I could have a fit so I have to stay on the meds. I am truely sorry to hear that you are feeling so down and fed up with not being the man you used to be and all I can say is ditto (except I will relate that to me as a lady!).

[Debra]

I had BM last year, i'm still having problems walking, mood swings depression, life is around of hospital appointments. My young son saved my life. I cant rember anything for months before this happenened, so i know how you feel. But chin up hopefully things can and do get better.

[StrawberryCream in reply to Debra]

Hi Debra. Have read bcak over some of your blogs. So sorry to hear that you are struggling. Its a big problem to have the patience to accept that it is a long slow recover process with no certaintly as to what degree of residual problems are going to remain. Like you my life revolves around hospital appointments. At the moment as time progresses more problems seems to surface and the appointments to various specialists increase! I am stunned to hear your young son saved your life. A remarkable thing for him to have done sounds as though you have an incredible son. I am wondering how he is coping with your illness and the after effects?? Yes it is hard to have a chunk of your memory erased. After I came out of hospital I found photo's on my camera that I had no recollection of. That was another guilt trip for me - having no memory of some very special times and amazing achievements that my son had done eg at 5 yrs old climbing the rock wall of an extremely tall tower and abseilling down the other side. I feel awful that I can't remember these things as they are special memories that I want to remember with him as he grows up - but I can't remember.

[Debra in reply to StrawberryCream]

Thank you so much for replying, i'm such a grump at the moment. But when i read through these blogs i realize i am not alone. I have been in touch with MT they are all so bright and bubbly. My son is amazing, but i carry alot of guilt, i cant remember what happened that day an he wont tell me. I'm having flash backs to him sitting on me to calm me whilst the Amulance team {Brilliant team} worked on me. But you know what talking and reading things off here has inspired me lol. I'm gonna put on my lippy anda smile.

[StrawberryCream in reply to Debra]

Hi Debra. Am pleased to hear you are going to put your lippy on and smile - hopefully ease off the guilt feelings for a while too to give yourself a deserving break. However, I too know how it is not that simple and it is a very rollar coaster journey especially where emotions, guilt and depression are concerned. Hark at me when actually I'm just as much of an emotional wreck too and loaded with enough guilt re my son as well! So far I have declined to go on anti depressants however I have been suffering a significant depression since last september and in the last couple of weeks I have got so low that I can't tolerate feeling like this anymore. It is also not fair on my son so I have relented and am now asking for anti d's (although not been prescribed them yet) and this week I start counselling sessions funded by the Meningitis Trust. It is such a relief that this wonderful organisation is there to offer personal support for us and I am filled with gratitude. I remember absolutely nothing about the day the meningitis struck and have had to also piece it together from other people's accounts. I find that somewhat troublesome not knowing what happened, how I behaved and what exactly was done to me etc. I realise my clothes were cut off but yet until this day I have not been able to work out what I was wearing as can't work out what is missing from my wardrobe. I understand that by the time the ambulance came I was so seriously ill that they set off with blues and twos but also had to stop on the way to work on me. Eeek! I need to listen to what I am saying but - ease off from beating yourself up a little.

[Debra in reply to StrawberryCream]

Thank you so much for your reply, it helps just knowing that i'm not alone or going mad lol, Hey and the lippy looked ok, Your story is so much like my own, its like reading about myself. I wouldnt worry about clothing, i think i was naked, my gawd what a sight, Keep in touch, together we can get through this and move on xx

[StrawberryCream in reply to Debra]

Hi Debra. Well you've given me a boost hearing that my blogging has been helpful as I never thought it would. Think I would have given all a bit of a shock if I had turned up at the school (where I was eventually picked up by ambulance) with no clothes on!!!!!!!!! Mind you as I said I have absolutely no recollection of that day or at least 5 months before and confusion for several weeks after I came out of my 3 week coma. I clearly had tried to carry on as if a normal day and not give in to the symptoms I was suffering. Walking my 6yr old son to school this morning he started chatting to me about what happened that day. This is the first time he has spoken at any length about the situation and his feelings. He said he has been worried he would make me cry so I reassured him that maybe we both needed to cry about it together and perhaps that would help us both to start to move on. xx

[Debra in reply to StrawberryCream]

Wow, did you both find talking about it helped, what a brave little boy, Daffy has told me how the MT offer help for childen and it does sound like something i'd look into when my sn... is open to it. Luckily and i bet my son was pleased i wasnt outside his school naked lol, you do make me laugh, have you tried my lippy tip yet xxx

[StrawberryCream in reply to Debra]

Hi Debra. No I haven't tried you lippy tip as not yet in the right frame of mind for getting 'dolled up' (not that I've ever been very good at that anyway). At the moment I keep holed up at home and only go out on essential trips eg to take my son to and fro from school, food shops, apts, and the very occassional other excursions out. I recently started having panic attacks in situations where I felt I had been challenged or misunderstood so have lost my confidence about going out and being social. My son did briefly have Play Therapy funded by the MT but it ran into issues with his school and caused huge stress to me so I stopped it. I do have the option to have it arranged for him again, but leaving be for the moment. Hopefully my son and I will have more conversations about how my meningitis affected him which I am sure will be helpful for both of us to deal with the issues together.

I don't know what the heck I did on that dreadful day I became ill and what I did or how I behaved!! I actually find that somewhat worrying that I don't know whether I was a co operative lamb or a uncooperative cow!!!! Take care. StrawberryCream

[daffodil]

Sorry to hear of your experience -I also had bm and septicaemia in Jan 2008 and was on life supprt for 9 days followed by 4 weeks in infection unit.I am still struggling with long term after effects -hidden -memory loss both shotrt and long term,24/7 vertigo which prevents me standing up or walking without crutches and need wheelchair, problemsarning new things,migraines.I too suffered from depression,anxiety and total loss of confidence .I even found it hard to lift rthe phone to contact the trust!

Do confide in this forum and also ,if you havent already,pluck up courage to phone MT helpline -without the helpline and the following counselling and 1-2- 1 contact system I couldnt have got through.These are all freeyou just need to plck up courage to lift the phone -not easy!On forums or with MT helpline or counsellor you are able to talk about your trauma and put things into perspective.The MT also do family days,art therapy which may help your young son to express his feelings.

I am now a 1-2-1 volunteer and have 5 folk who have been through Meningitis who I keep in touch with.It works both ways as you are matched up with someone with a similar experince or similar effects and you end up becoming friends who help each other.

Be kind to yourself -Meningitis was not your fault and you are such a brave,strong person to have come through this.Your son will never feel bad -he has his mum with him,and it could have been so different!

It is also very normal to feel depression,anxiety and loss of confidence.I went from an outgoing,independent mum to one who was unable to walk,cope with own personal care or remember the simplest of things!It frustarted me,but even more so my family who seemed in denial.If your son is younger it will be better and easier for him just to accept you as you are.Remember nmeningitis is a brain injury.Although they pronounce you recovered ,only ypou can know the real and hidden effects.I also had a huge need to talk ablut what had happened as like you I had no memory of what had happened.This is one thing the MT counsellor I had was wonderful with -she just listened week after week to me going over the same things .It helped me get things sorted and also relieved my family and friend of me needing to relive it all.At one point I was told I had post traumatic stress and had flashbacks for at least a year,but they did lessen and then disappear after I was able to talk about it.Dont want to go into it all here-but I was misdiagnosed and sent home at first,so am very very lucky to be here at all,as if I hadnt fitted and fallen out of bed I would have died in my bed.

Every year on my MT anniversary the whole thing comes back again,but I can honestly say that as each year passes it is less traumatic and each year I realise that yes I nearly died and yes I have lifelong aftereffects,but I have now adjusted to a new me !It is one with many more limits and restrictions (worse thing is the vertigo and not being able to drive any more) but I am greatful for my benefits,which pay for my care and that I can still enjoy many things -reading, cardmaking,my kids,and volunteering for the MT through awareness raising,1-2-1 volunteering and cardmaking for MT funds.

Re benefits,if you want to email me privately =-am not sure if you can access my email on my profile or not? I can help you with this as have had lots of experience with DLa ,Esa applications.You can claim on mental health issues,you just need to knowe how to word the form.The website benefitsand work .co.uk is fabulous -nothing to do with govt or dwp,but a charity.Therevis lots of free info on how to word your claims and you can also join for a small fee-think £18,but very well worth it if it gets you the benefits you deserve.

Hang in there and know that you are not alone -there are lots ofs ways you can get help .

[Debra in reply to daffodil]

Daffy i'd love to be incontact with you, havent a clue how to do it, Any ideas

[daffodil in reply to Debra]

I have no idea either,so have posted a question and hopeful;ly someone on forum or an administrator of forum might help us -I dont want to give my email address to everyone.

[StrawberryCream in reply to daffodil]

Hi Daffodil. Apologies for not replying to you yesterday but it was anniversary day and my focus was on getting through that. I have also now read back through some of your previous Blogs to others. There are certainly many similarities in what we have had to cope with but I guess thats because we both had the very nasty Bacterial Meningitis. I have been reading the posted Blogs and Questions for sometime now but only recently found the courage to place my own. Initially it seemed mostly people with Viral Meningitis rather than bacterial and for some reason I didn't think I fitted. I didn't expect any responses but have been so surprised and helped by getting quite a lot and finding others that understand the problems and trauma's you can be left with that also affect your nearest and dearest. I was feeling so down and isolated when I first blogged as lots of people see me looking ok on the outside now that they just do not understand the brain damage and also the incredible tiredness that frequently hits you and is such a struggle to recover from. I have been in touch with the Meningitis Trust since late October. The Trust have been great and I find the phone calls amazingly supportive and gives me that boost to struggle on. Next week I am also commencing counselling as at the moment seem stuck in overwhelming grief for my old self. So much of what you blog is exactly how it is for me - physically, emotionally and socially. I got through my anniversary day by, at the last minute, contacting a friend and arranging to go to a Country Park for the afternoon. I was fuelled to do this because of the guilt I feel for what I put my son through (and still feel I am no longer a good mum) and my enormous love for him and not wanting him to have to suffer me being foul on anniversary day. I was very down but my friend helped my son have a good time. It was so lovely to see him happy and laughing and having great fun riding his bike in rugged undulating (and muddy!) forest and climbing on the natural climbing habitat of fallen trees etc (better than any playpark). I spent a lot of time thinking back over all that I went through - which I tend to minimise but was actually incredibly awful. At the moment I have managed to secure Contributions based ESA and been put in the support group. I constantly worry though that they will pull the plug on it and because I can manage my own personal care and walk (even though I have balance problems and fall) I have been told by a Welfare Benefits Advisor that I am not entitled to DLA. Thanks for your reply. It is full of reasuring info and advice and I will be re reading it (no doubt several times) to take it all in.

[daffodil in reply to StrawberryCream]

Hi Strawberry cream -I agree with Soxy-what a yummy username!My apologies also for taking a few days to get back to you.It is good that we all understand-even posting one blog can take a lot of effort for us after Meningitis.I am delighted that you and others have found some helpful advice and I look forward to getting to know some of the regular posters.Ive had some good old chuckles at your and debras posts( you being naked or was it debra !!!)-its good to know we can still have our sense of humour after such devastation.

I am so glad that you got through anniversary day with the help of your pal and your son.Thinking back ,even outright flashbacks(which I had for mmore than a year) are quite normal,withsuch a traumatic illness.You are in early days yet but I can assure you thet this will get better as the months and years go on.MT counselling helped me hugely,as did taking up meditation(when I remembered to do it!) and my main support was and is my faith.I have needed this as unfortunately my family fell apart and all fell out after the Meningitis and this added to my trauma and depression.Never did I think this would happen in my familiy but it did -I think my husband,jkds and parents could all have been helped by counselling but they wouldnt.Thats the tragic thing is that trauma can bring people closer or push them apart as we all have different ways of coping with the aftereffects.So if I could offer you one bit o9f advise it would be to see if MTR could help you and your son and indeed any close relatives- its great that your son has been able to talk with you about the day you took ill so maybe thats all thats needed?Children are more resiliant than we credit them for_I say this as a mum and ex teacher.

Never ever feel you are not agood mum to your son!The greatest gift is that you survived and he is not orphaned.I am sure it was your son that you fought to live for -it certainly was for my children that I prayed that God would not take me yet_I was dying and had an out of body/near death experience and I know I was given the choice to go towards a beautiful kaleidoscope of colour or walk back to my children.Every single one of us who has got through Meningitis,whatver type is brave beyond measure.I still weep buckets when I read the stories of those who have lost loved ones as it shows just how deadly M can be.

I believe that we can use bad things to either create more negativity,bitterness,moans or we can choose to try to do what we can to bring something good out of it.You just have to look at all the charities,fundraising and voluntary work that goes on to see how humans can turn bad to good or at least less unbearable?Believe me I am not always positive and have been in some very dark places and still have the odd days when I get so frustrated at my limitations,but it really does get easier.I am so glad to read that my ramblings are helping others as one of my big frustrations is that I dont feel Im able to do much since M.But through this forum,I can pour out my heart and in some way connect with others-and its always a 2 way process.We may think we are only getting tips/advice,emapthy but we give back by replying and showing we care.

Re your Dla -I honestly think what you have been told is nt true.You could get at least low rate mobility due to your balance and walking problems,especailli if you have eveidence of falls.There is also the risk of falling which is very significant as you can argue that you could fall in kitchen,bath,on road -even if you dont it is the risk that is important.I had several bad falls -one when broke finger and one when I overbalanced in kitchen and poured mug of tea down stomach and had major burn.BoTH Ttimes I had DR eveidence to back up!

With personal care,although you say you can do it.again what are the risks if your balance is poor.The guidelines I was given from benefits and work charity say that even if you do actually do your own personal care,if the need is there and risks are there if you do alone,then that counts as needing help.For instance when I was first diagnosed with M.E I was in an even worse state but I was so ill I didnt apply for any benefits.After a few years I did try for DLa but didnt really know how to word it so it probably sounded as if I could do more than I could.

benefitsandwork.co.uk is thae most fantastic charity and has been such a help to me,enabling me to claim Dla and Icb.I would recommend anyone to have a good look at it before any applications.Its so unjust that the system makes it so hard to apply and causes so much extra suffering when thats what benefits are meant to ease !

All for tonight -sorry a bit long!

[StrawberryCream in reply to daffodil]

Hi Daffodil. What a relief that I remembered correctly, would have been very embarassed if I had mentioned the ME to the wrong person!! I have really taken to this 'blogging' at the moment and find it very helpful. Was reluctant to join in to start with as thought it wasn;t my thing - but finding that courage to write an initial blog has had an amazing helpful and supportive result!! Maybe its because we can spill our hearts out to the computer, then press 'Reply' and it goes out there to everyone annoymously and not a direct conversation face to face, Guess the next stage somewhere along the line will be perhaps to actually meet with other Meningitis survivors. Trouble is the Family Days etc always are held so far away. I again hope I am not making a blooper but I get the sense that like me you are a slightly more mature Meningitis sufferer (please may I not have got that wrong and offended you??!!!)? I too have a history of other health probs and ops but that was all behind me and life was going so well .....then WHAM the Bacterial Meningitis bugs got me. Unfortunately so of the old problems have got exacerbated within the residual effect of the meningitis. As you will note I have returned to using the Blog page as flitting between this and the Question page was getting me into a right ol' muddle. Take care

[daffodil in reply to StrawberryCream]

Hi Strawberry cream- I so love your username -so yummy! Am not sure what you have in mind as slightly more mature ,but am 47yrs(actually I need to check that as Im not sure if Im 46!!!!) My kids are teens,the oldest has just finished 1st year at uni.Actually I feel about 90 yrs so maybe you have guessed welll!!!

Thats one thing that seems to have disappeareed is my ability to remember my age and other peoples ages,.I have to work it out!

We stay in Scotland and far from "civilaisation" so perhaps ,like you,many Mt facilities are too far away.

Your other health problems,have probably contribued to your immune system being lowered and thus the meningitis?Do I remember correctly that you mentioned you had viral M also!!I asked in hospital if Meningitis was unusula and they said it is fairly unusual to get BM and septicaemia and that in winter monrths they would see around one case a month,unles there was a cluster of cases.So it is an illness that strikes only when outr immunity is compromised by lots pof other illness,drugs and I think from my ME being housebound so long -lack sunshine,fresh air??? Vitamin D -I now take vitamin d tabs plus a multitude of vitamin supplements.

Crickey,this is so unfortunate.I asked in hospital if it was p[ossible to get Meningitis again and dr said it was unlikely,but that you could get a different type,so you are proof of that!I also have read posts from folk who have had M repeatedly,so I suppose we all have to be on alert.I know if I have a really awful migraine and when dizziness gets even worse I get really scared and wonder if its the dreaded M back again!

I think you are right in feeling that cyber space is really great and not the same as face to face or even phone contact.You can type away,but know that your thoughts are shared but leave it to the "universe" as to what happens after.People may reply or they may not be in the state to do so.But by having the courage to blog,you are helping others ,who may just be sitting following what is written.It took me a long time to pluck up courage to go on this forum though I did give my story on MT website first.-Gillians story.Thing is you never know if what you share with others will be the one thing that helps them to keep going?Sometimes its just the simplest thing eg shared symptoms,shared worries.

Will keep a look out on the blog page!I am a bit confused also as didnt realise at first I was blogging!!!!

Sending you a big hug,x

[StrawberryCream in reply to daffodil]

Hi Daffodil. Let get the age bit over first - I struggled to find the right words to use and the only thing I could think to use was 'mature'! Probably in hindsight not the right choice!! Think I was trying to figure if you were in your 20's or 30's or a bit nearer my age. At 47 yrs we have 6 yrs between us and unfortunately I have to admit that I am the oldest. Like you I didn't used to feel my age at all but now I do feel like an OAP before my time!! I also have that problem of not being able to remember my age or anybody else's anymore. Also I struggle to know whether it is the beginning or end of a month or indeed what month it actually is, plus a whole host of other memory problems. I used to pride myself on my memory but now it is totally naf and I have to rely on calenders, diarys and post it notes etc etc. Well meaning people are constantly trying to reassure me that they have that problem remembering things too or it's our age, but I measure it on how I was before my illness.

The ironic thing is in the past I used to be a Sister on a Childrens Isolation Unit and nursed children with Meningitis. If I remember and understand things correctly, most of use have the bugs that can cause Meningitis in the back of our nose/throat but for most they don't cross the blood/brain barrier and cause Meningitis (Perhaps if this is being read by anyone one from MT they could please clarify if this is indeed correct?). Although I don't really remember how I was in the months prior to being struck by Bacterial Meningitis I believe it was highly likely (as you rightly suggested) I was under a lot of stress and probably had a depleted Immune System. I had just had a big building project done to my house and made a very upsetting and difficult decision to move a foster child on, who had lived with me for 5 years, due to long term difficulties which I won't go into. There are many different strains of for example bacterial Meningitis and so therefore it is definately possible to get it again. Not sure if you can even get the same strain again as maybe the body does not develop immunity like for chicken pox, measles etc. As I said in a previous blog - you are amazing that you have dealt not only with ME but Bacterial Meningitis & Septicaemia too! If you live in the countryside of Scotland try and make it your goal to at least get outside to sit in the shade on sunny days (that's if you get blessed with any in Scotland!!). xx

[StrawberryCream in reply to daffodil]

Hi Daffodil. I looked on MT website for Gillians Story but I couldn;t find it??

[daffodil in reply to StrawberryCream]

Hi Strawberry cream - if you go to MT webpage and onto online forum.Maybe you have to register for forum to see it? Look at LHS of page and scroll down to bit that says share your experience of Meningitis -Gillians story is on page 3 -there are wee arrows at top and bottom where youi can go to different pages.Hope that helps.

How are things with you and all the others viewing.posting? Havent been online for a few weeks as going through bad M.E phase.

[StrawberryCream in reply to daffodil]

Hi Daffodil. Am sorry to hear you are going through a bad M.E phase. Seems to me you have suffered badly on the major illness stakes and the impact of M.E compounds the post meningitis residual effects and visa versa. Thanks to your guidance I have now read your story on the Meningitis Website. Think I had already grasped from our 'blogging' that you had a an awful experience to add to having contracted a truely awful illness. However, reading your story made me gasp at the dreadful experience you had but how amazing you have been to come back with that fighting streak to do so much good for the MT and the people you have spread the word too through the website and the support and info you give to others. WELL DONE DAFFODIL. I have been off the blogging for a while as took my son on a last minute long weekend to stay in a static caravan nr Hastings. With all the organising, list making to try to avoid forgetting anything, packing, driving and entertaining and looking after my son and myself, I ended up totally exhausted and have been struggling to recover. The greatest pleasure though was seeing my son happy and enjoying himself after we have had such an awful year. He told me numerous times that weekend that he was really enjoying himself. When we came home he became moody, miserable and tearful and when I asked him why he said it was because he wanted to stay there. So despite the immense challenges for me I feel a great sense of achievement that the weekend went so well. Although I do have to admit that my sense of direction now seems absolutely naff and I got lost finding my way to the site and also had to rely on my 6 yr old to direct my round the site as I never did manage to work it out even with the site map!!

Hope your M.E goes into remission for a while very soon. Take Care

[daffodil in reply to StrawberryCream]

Hi strawberry cream -thanks for your so lovely comments.I honestly dont see myself as having such a fighting spirit,though It is my faith and my kids that keep me going and trying to make the best out of what has happened.It would be easy to get bitter and resentful,but that doesnt help.

I think all of us who are blogging or replying to questions are doing wonderful support work,probably far more than the medical profession are able to give.

Am so happy that youve been able to have a holiday with your son.You have done amazingly well to have comethrough all you have and still be so devoted to caring for your wee boy.You are one brave lady!I at least have my hubby and two teens about,though Meningitis has finally destroyed what wa sleft of my marriage.I am guessing that you are on your own caring for him?Do you have other family around?

Along with memory loss,balance issues,loss of direction sense seesm common.I was never good with directions but now I am awful.It can be very frightenming and disorientating.I was in toilet once in a restuarant and came out and couldnt think how to get back-ended up in the kitchens!One of the games I do on lumosity.com is called penguin pursuit and is to do with spacial orientation and sense direction -I am dreadful at it and no matter how many times I try it I seem to get worse -Im now wondering if really there has been some sort of damage from Meningitis.

can you access family therapy from MT?I know they have family days and art therapy for kids.Depends where you are.I know there is nothing up here.

[StrawberryCream in reply to daffodil]

Hi Daffodil. Yes it is helpful to hear others are suffering similar problems and the blogging is supportive and quite therapeutic too. Only problem is when it is by blog, like email and text, you don't know the way the person is saying it and there is the risk that the intended expression can be misinterpreted. ~Thankfully I have only recieved one message from someone else that I wasn't sure how to take it. Largely it has all been wonderfully kind, supportive, empathetic and helpful.

Yes I am totally on my own with my son. I adopted him 2 and a half years ago but he had been with me as a foster child since he was 17 months old. He is now 6 yrs old and absolutely gorgeous. I love him so much. As I have said before, I feel hugely guilty for what he went through when I had the BM as I also did not have a partner or extended family to care for him. So added to his early trauma's and losses he then was highly traumatised by me suddenly not turning up to school to pick him up and then not being allowed to see me for 3 weeks I was in a coma. He worried I had just left him or I might die and leave him, and also had to be looked after by different people including some weeks back in foster care. I have had to try and rehabilitate from the BM and at the same time resume full parenting for my son. It has been incredibly hard but I was determined to prove I could manage as I was very scared they would take him away from me. While we were separated it felt like my heart had been ripped out.

I am so saddened to hear your marriage and family relationships broke down. Meningitis is such a cruel illness as not caused by our own actions but the consequential residual effects can destroy relationships with family and friends as they struggle to understand why we appeared to look recovered yet are not the same because of the hidden brain damage. I still myself struggle to come to terms with the changed me and the fact my life and what I can do is no longer the same. I have lost my old self, my intelligence and ability to do things and manage my life in the way I did before. I have the insight to know how different I am and I find that incredibly hard to come to terms with. However, the one thing that keeps me striving on is my wonderful son who I love so very much and that fuels my determination to try to give him the very good life he deserves as best I can.

I do hope your ME has gone into remission a bit now. Take care

[daffodil in reply to StrawberryCream]

Hi strawberry cream -oh your user name makes me hungry!!

Have you had counselling from MT?I apologise if you have already said/written -this is one of the problems I have with blogging as I quickly forget what I have said or others have written,so forgive me if I ask same questions again!

Guilt feelings are soo common,but are not helpful to us either.I know I felt huge guilt about what had happened and still struggle at times when I realise my limitations and the changes illness have brought.I even felt gulity that I didnt stand up for myself at hospital the first time and allowed a young doctor to dismiss me as an over anxious woman.I felt guility about my mum and husband falling out,which resulted in years of no contact and still relationships are strained.I was able to talk about it to the MT counsellor and realised that these effects were not my fault and I couldnt fix them myself.I think ,when we have been used to being independent and in charge of our own lives,learning etc the changes from illness are very hard to adjust to.

We have indeed lost our old selves ie the way we were before Meningitis,but we havent lost our spirits!You certainly don't sound as if you have lost your intelligence ,though I know you are aware that it is not the same as before.As you say the awareness that you are changed is perhaps the worst.If we wrer not,I assume we'd be ok and would not worry.

I was a primary teacher and am a person who loves to learn all the time.I find that my loss of memory,especaily short term means I just cant learn anything new now.I would love to change carreers,even just study for pleasure but its hopeless I have have forgotten what I read within minutes.Did you say you were a nurse?

So much of our identity seems to be tied up with our jobs and what we do,so when our careers are ended/threatened or we get ill or injured,we feel we are seen as lesser beings.

One lesson chronic illness has taught me is that we are so much more than our jobs,abilities.I can honestly say that 10 yrs after being struck down with M.E,then Meningitis I am a better,more empathetic,more grateful person than I was before.I get more satisfaction out of the simplest things now -before I was too stressed ,running about with the kids,my job that I didnt have time to see the simple joys.Now ,a phone call or a visit from a friend ,a hug from my kids.a beautiful day can make me feel the luckiest person on earth !

I also know who my real pals are -the ones who are still around and make time from their hectic lives to keep in touch.Much of my old live was false,doing things out of obligation ,even if I ddnt really want to.

You are right about writing ,texting that we can sometimes take the wrong meanings -do please say if I blog anything like that! When you cant hear tone of voice or see body language it can be difficult.

Your son has been through some tough times,but sounds like you rescued him from even worse times and Im sure he will pull through this latest trauma.Your love for him shines through all your trauma and love can conquer all -sounds mushy!!

One thing I do every single day since Meningits is hug my kids -they are teens now -and tell them how much I love them.When I was a child I never felt really loved as my parents never said,though I know they do,Your son may be a bit old a 6yrs for the book Guess how much I love you -but it was a favourite of my kids.

Your story is inspirational -to have managed alone to keep looking after your son after being so dangerously ill.You will improve with time and though it is so frustrating for you just now( only a year on) your emotions will settle down and you will one day look back on the trauma and see that you have been refined -think of the pearl which satrts out as a tiny piece of sand and through the years turns into a lovely pearl of great beauty.Hardship

can refine us and make us better people and more satisfied( even with less than we had before) or it can turn us the other way and we can become bitter,resentful,and long to get back to our old lives,

The longing to go back is natural and part of the grieving process and you are still in that stage of grieving for your lost self and lost life.You cant rush this -we all take different amounts of time.I consider myself lucky that because of my 10yrs of chronic illness with M.E and other chronic illness I think I had already grieved for the lost me -the busy mum,wife,teacher,rainbow guider,gardener.learner,driver.So Menigitis was a huge set back and has done permanent damage,but I was already limited in life by the overwhelming fatigue and pain from ME,so what has resulted from Meningitis is just another setback.I never considered myseld disabled before Meningitis but do now that I cant stand up without crutches.So I suppose my ME has refined me and because of this I can take living with after effects of Meningitis.And you will know that isnt easy and though they are less now,I still have thoughts that I just cant cope with living like this any more -but now that is usually as result of insensitive comments from others who say how amazingly well I look,others who have questioned why I need carers,claim Dla etc -there is a huge hatred amongst some of those of us who have to claim benefits,like we are all benefit frauds -I blame the media for that one.

Sorry this is a looong ramble today!!

Hang on in there Stawberry cream and everyone else too.

[StrawberryCream in reply to daffodil]

Hi Daffodil. Thanks for your long answer sent a couple of days ago with lots of supportive suggestions and info, and also your response i've just read in the 'question' area. You are such a help to us still struggling to find our way and am so grateful that you share your journey with us. It seems that having both had the mega awful and life threatening Bacterial Meningitis the problems with have been faced with post recovery have many similarities to lesser or greater degrees. I wanted to click back to your answer to the 'question' section but I did that once before and discovered the answer I had started to blog got wiped and I had to start all over again, I will therefore trust my dodgy memory to say that you have perhaps had an even more awful time as if I recall correctly (???) you also said you have been a ME sufferer too. Not surprising that to then get struck by bacterial meningitis that your body has physically really had a major struggle to overcome. I am not sure if the fact that you had gone through all the grief process made it less of an emotional problem for you when you got the Meningitis cos I would be screaming 'Why me!' 'What have I done to deserve getting two major illnesses that both have such a damaging outcome to emotional and physical ability with an extra whammy from the meningitis throwing in some brain damage!!! Blimey Daffodil you are the hero, and how incredible that you blog and offer such encouragement and advise to the rest of us!! Hope I haven't just written a load of irrelavant babble and embarassingly find out I made a blooper and it wasn;t you who had ME and BM!!!!! Gosh I will feel so embarassed not sure I will ever blog anyone again!!!! I do hope to do some volunteering for the Meningitis Trust at some point but not quite yet as don;t think I'm ready to manage it yet although I have got a collection box to hopefully get a few donations from my neighbours at the Diamond Jubilee street party we have on Tuesday. Think I will say 'Goodnight Daffodil' for this blogg as I am starting to struggling with overwhelming tiredness. Keep blogging as it sure does help.

[Soxy]

Hi StrawberryCream (what a lovely username - my favourite food lol)

I've just read your post and understand some of your anxieties particularly relating to your 1st anniversary of Menningitis. I had Meningococcal Maningits (sceptecimia) in June last year and like you am absolutely dreading the 20/21st of June as that was when I became ill and was rushed into hospital. This date will not only be hard for me, but also my daughter and husband - like yourslef I asm grateful to have survived but what this illness has left me with is an ongoing battle to cope with everyday things. My memory has been affected, I still get tired very quickly, my eyes have been affected, my moods change and I am far less patient etc etc

Using this forum to share my experiences is a big help and has helped me to realise that I am not alone in how I feel. Also the MT have been a fantastic support for me and my family - without their support I don't know how I would have coped.

Similar to yourself I am also going through the having to claim benefits, and am in the process of completing a very comlicated form for ESA. Any help you can get with these forms the better as I jhave really struggled to complete these (even with help from the MT).

Stay strong and know that you are not alone - it may feel like it at times, but be assured that people on this forum are thinking of you :).

[StrawberryCream]

Hi Soxy. You made me chuckle (don't do that much!) that you commented that you like my user name. Thanks. Yes I am a very new blogger but as you say - I also have found it very helpful. Muanniversary day by, at the last minute, contacting a friend and arranging to go to a Country Park for the afternoon. I was fuelled to do this because of the guiltch of what you describe is all the things I have struggled with too and as time goes on more problems eg with my eyes, comes to light. I got through my I feel for what I put my son through (and still feel I am no longer a good mum) and my enormous love for him and not wanting him to have to suffer me being foul on anniversary day. I was very down but my friend helped my son have a good time. It was so lovely to see him happy and laughing and having great fun riding his bike in rugged undulating (and muddy!) forest and climbing on the natural climbing habitat of fallen trees etc (better than any playpark). I spent a lot of time thinking back over all that I went through - which I tend to minimise but was actually incredibly awful. The Benefit system is incredibly difficult for Aquired Brain Injury and especially the ESA medical form with its tick boxes does not cover the after effects and damage post meningitis unless a person has been left severely physically disabled. Like you my problems don't easily fit onto the form and the Welfare Benefits Advisor I had visit me was no help at all in trying to put my problems onto the form. In the end i searched the web and found info to help me know how to word things and explain the difficulties. Thank you so much for your kind, reassuring words. It is like a support group albeit online. Wish there were Meningitis Support groups more locally where we could all meet up.

[hannah88]

hi

You are still recovering and this takes time.

You have been through a number of traumatic events i know cuz i have been there. more than once unfortunatly.

I have been left with the same injuries plus a few more as my sight was damaged.

My last coma the one that did the most damage i was 21 weeks pregnant with my gorgeous little girl. I have so much of that time missing and had my whole past wiped but some came back some didn't but its a journey and every year on my anniversary's of my illness which unfortunatly there's quite a few now I mark them, I decided life's precious and what i went through and fought just like all of us survivors needs celebrating.

5th Jan 2008 is the one I most celebrate as myself and my little girl both beat doctors odd's in surviving, sometimes I will plan a family meal, but mostly prefer days out somewhere and I light a lantern and watch it go up in the sky, for me I found this a far better way to mark the date, however I was like you at first, but then it becomes a special day, the day you survived rather than a sad day and you begin to look forward to it as celebration on the calender rather than a day you wish you could sleep through wake up and have missed it.

As for children they are more understanding than they are given credit for, i had my mom go through stage 3 nhl (cancer) when I was 10 years old and she had chop chemo which made her so poorly sometimes she couldn't even sit up, so on them days we had OUR time, we would get a pizza and ice cream delivered and cuddle up watching dvd's on good days we would go out even just to the park, so now I copy that with my daughter who is 4 now, Good days we go on fun days once a month and bad days is cuddles sofa and dvds and then you have normal days, I understood the changes mom was going through and learnt what she could/couldn't do and she was honest about bad days eventually it all came together.

Mom got better sadly I might never be 100% due to having a weekend immunity and severe epilepsy, but it just makes that fun time that extra special.

Also think of you, it's still early days, don't be to hard on yourself

[StrawberryCream in reply to hannah88]

Hi. Apologies for taking a while to respond back. Gosh, to have had meningitis so many times must be absolutely dreadful but well done you for your positive and encouraging attitude now. Amongst other things I have been struggling with snowballing mental exhaustion throughout the school holidays and feel a degree of relief that my son has gone back to school today. As for me I'm so exhausted it is difficult to function well, I am very unbalanced and prone to falling and bouncing off door frames and furniture and am very emotional/tearful. I am so very tired yet struggle to sleep! I have been determined that my son should have a better summer holiday than last year (I had just come out of hospital and was extremely weak) when some of the weeks we were still separated and then I couldn't do very much without the help on a few occasions of friends. I think I have achieved an ok summer holiday for him this year although it has been finding activities that he can participate in and be active while I can sit and watch rather than join in like I used to love to do.

There have been lots of things happening recently that I have to try and accept/come to terms with too. I now have a walking stick and bath rails are to be fitted as I continue to have balance problems which I have now been told will never completely recover. My balance continues to be negatively affected by tiredness, darkness, turning and bending etc. I no longer have a job. Plus if I don't continue on the anti convulsants I am likely to have fits. Etc etc etc. All hard to get my head round. I have become quite socially isolated. I am also being told my emotional instability is likely to be due to the severe brain injury I sustained. So much of the after effects that you still suffer, you are right, sounds as though it is remarkably similar to what I now suffer. Recently I have had a hearing test which has confirmed reduced hearing in my left ear and I am awaiting an opthamology apt as my eyes apparently are not working as well or together.

I am so amazed that one of your episodes of meningitis your were pregnant but wonderfully came through and had your gorgeous little girl. That is an incredibale and remarkable achievement. I believe it was my son who gave me the strength and determination to fight back from the brink of death and still helps me feel determined to carry one despite the hurdles and uphill battles. I hope that now I have been through the 1st anniversary and gradually living the year of all the reminders of events etc that like you I will be able to celebrate my survival rather than just keep getting pulled back into the 'why did this have to have happened to me ' and 'I want my old capable and independent self back'.

You are an inspiration and I will blog you again when hopefully I am less mentally exhausted and like you be able to be less self focused and able to respond in a more balance way which acknowledges your progress. Many Many Thanks.xx

[nfregoe in reply to StrawberryCream]

Did you have problems with pneumonia while in a coma?

[StrawberryCream]

I was very congested with lots of secretions because of being in a coma so unable to cough or deal with things as we usually do, the tracheaostomy and being ventolated and which took a few weeks even after I came out of the coma to resolve. They were giving me nebulisers and I was on IV antibiotics. I don't think it was considered to be pneumonia. I have also noticed that since I had the Bacterial Meningitis & Septiceamia that whenever I get a cold it now seems to go to my chest and I get chest infections whereas that never happened to me before. Think that is maybe because being ventolated for 3 weeks, the suction tubes being put down the breathing tubes to aspirate the secretions and my immune system having taken a battering. Are you asking because you also have had meningitis and have a concern about yourself? Best wishes.