friendships strained

[Innis]

Five months post bacterial meningitis and I don't know who I am anymore. I feel completely at lost. I contracted the illness when on holiday, while unconscious i could hear my partner pray and beg for my life. When I came around my memory was poor, I was giving addresses I lived in when I was a child (im 34) and didnt know who anyone was. After 19 days I got repatriation to home country and was admitted to a teaching hospital. While there the interns repeated every test, including lumbars (my fourth at this stage) they would come into my confined room 4 at a time to look at my eye. I have papilldemia. They also found a murmur.

When I first left hospital I was elated albeit very tired. I was determined to enjoy christmas with my partner and make up for what was a terrible holiday. That was great but the expectation then was that I was recovered. I wasnt. When I returned to work in January I felt happy but I was continually fighting back tears. I noticed that I was a lot slower in doing tasks, and my concentration is poor. I can stare blankly and quietly for an hour before I realise. I didnt feel like I was me.

People kept comparing me to what I was like before I went on holiday. I was outspoken and enjoyed a good night out. I found it difficult to be at large social gatherings, particularly with flashing lights and loud music. If I had a drink i would have memory lapses. So I stopped. My partner became frustrated and when he would I would cry. Friends kept their distance and I became lost in my own mind.

My relationship has since ended because I cant get back to how I was. I have found that people dont understand or maybe want to understand that getting back to daily life can be tough. I am still at work, with constant headaches, motion sickness, numbness down left side of body, cant make decisions. I am also losing my hair and have constant pressure building up. I am seeing a councillor and nuro psychiatrist. My employer has been more than understanding but have no support network where i live now.

While I know in myself I am recovering remarkably well, I would like to hear from anyone who has noticed that friendships and relationships have become strained during recovery.

[Hidden]

Hi there

Yes, oh yes, sadly this is true. BM is very serious and recovery is long and slow. You can't just 'get over it'' and be the same person you were, even though people will find that hard to understand and will keep reminding you what you used to be like (not helpful at all) I had huge memory issues - I have forgotten half my life - and have lost pretty much all of my old friends. My marriage ended too but now, after a long process of healing I am able to work and smile. It is tough and at first I had a lot of anger and sadness at what I had lost but now I understand that I have an invisible disability although it no longer defines me. Be kind to yourself and take things at your own pace. We need to do things more slowly now, after our poor brains have been attacked like this. Find something that brings you joy. I hate noise now (crowds, kids, random loud sounds) but music has been incredible therapy. My musical tastes have completely changed but I have been to a few gigs now and had a fantastic time. You are wise seeing a counsellor, reach out for all the help you can. I wish you lots of luck

[Innis in reply to Hidden]

I am the same with big crowns and loud noises. Thank you for your response it is very sad how relations become so strained.

[ignoreit]

Absolutely...I noticed that friendships & relationships became strained. When I was released from the hospital, I lost my boyfriend and a lot of my friends drifted away. (I was 33, single, and previously very popular.) So I made ONE BIG CHANGE! I stopped talking about both my illness and the after effects. Pure & simple, I figured out that people don't want to be around "sick" people. So I pretended that everything was fine. When I made a horrendous mistake I would have never made before the BM, I just laughed & made fun of myself...never mentioning the illness.

I've always been careful with money so I was able to not return to work for 6 months after being released from the hospital. (A total of 12 months since calling the ambulance.) I stopped drinking any alcohol but no one noticed. (I would order one, pour it down a sink, and drink water all night.) No one knew. I concentrated on being FUN...not on explaining all my new problems.

That's my advice...don't talk about it! And remember, the after effects get better every day.

[Innis in reply to ignoreit]

Thank you for your response, its not that I am explaining all my new problems. My friends are struggling with the change in me and the constant reminder of who I was before has brought me down and effectively ruined friendships. I will certainly apply the no drink and do my best get back to the fun me.

[LMains]

Gosh, I wish we lived in the same town (we are probably in different countries even!). I gather you are probably in your 30's. I am in my 50's, but I am friends with women in their 70's and in their 40's. Some friends definitely fell away, but oh, how I hold dear to the 2-3 who did not! BM left me deaf for 3 months (I got a cochlear implant, so I can now hear) and I walked with a walker for about that same amount of time (now walking 4 miles a day with not even a cane).

I guess what I am wondering is if you can find a few women not in your decade- maybe through a walking group? One of my best friend is literally old enough to be my mother (her son is just 8 days younger than me), but we have the same sense of humor and are married to the "same" man. She has been a godsend through all of this.

In any case, I am sending you good wishes and hugs!

[Innis in reply to LMains]

thank you I need to up my game and try and get out there again and meet people through new activities. But I am am also grieving at loss of old me, friendships and the man who saved my life. I have considered joining a sailing club and will give it a go when the weather improved. thank you for your encouragement you made a great recovery x

[Hidden]

Hi Innis,

I am nearly 6 years post BM having contracted it in my early 30s. It is a brutal recovery and as I have written recently in my other posts it took me 6 months to get to a broken but functional stage and at least 18 months to regain my spirit. I found the advice to 'give it time' frustrating and I struggled to see the possibility of progress - but it did come.

I strongly encourage you to have your hearing checked and to persist with getting pain relief managed to the minimum level you can cope with.

I am sorry you have not had more support from your partner - it must also have been very traumatising for them too.

I found I had a strong aversion to noise, bustle and alcohol for a long time and learned to make the best of dozing, listening to gentle music and reading in short bursts: I found solace and perspective in Zen, Stoicism and some Buddhist reading (Alan Watts on The Way of the Tao or The Book On The Taboo... I can't recommend highly enough). During my recovery i almost completely stopped socialising; and, partly due to returning to work far too soon, my relationship was very strained. Due to the constant pain and exhaustion I was very intolerant of others and anything that frustrated me (I found expending the energy to do or even say anything once tough and having to do it twice would frustrate me unreasonably). I also found most people's everyday concerns unbearably petty. In retrospect this was pretty much all down to exhaustion and the greying effect of chronic pain/sickness.

Even though I am now significantly recovered I rarely drink wine although I find spirits easier going surprisingly - and my social life remains very tame! My hearing loss makes meaningful socialising impossible in noisy environments.

Everyone's journey back is different but I now have a meaningful joyous life which was unimaginable to me in the months after hospital - I am different but I can largely enjoy those differences and only rarely mourn what I 'lost'. I wear hearing aids and some activities where I go out of the normal range of movement: tipping my head right back and then forward, or going on children's swings or roundabouts, or trying to jog backwards, will cause my world to spin badly and me to fall over (and feel horrendous) - but my body has found ways to tolerate and manage to let me do the stuff I need to do 😊.

I feel it is important to talk through and process the trauma of nearly dying - but as others have commented not many people are comfortable with hearing or being made to think about this. Do consider having therapy to deal with processing it.

Also don't forget to love yourself - you (like everyone else) are amazing and wondrous - even if a different amazing and wondrous to before. Smooth seas don't make skilful sailors as someone once observed.

Jos

[Innis in reply to Hidden]

Thank you Jos for your lovely words of encouragement. I had it all before meningitis planning to by our first property, picked out the ring. I had waited a long time for that. I understand that it it was meant to be it would be regardless of illness, but it paints me that this has happened and I am angry now. I am angry and the lack of understanding from colleagues who laugh when it take me a few seconds longer to say a word or the assumption that I am lazy. And I am angry that I couldnt get back to myself sooner and rekindle what meant most to me. Talking really is helping, my only regret is that I didnt do it sooner. At times I feel like there is someone else inside my body. Your words are encouraging and I thank you for taking the time to reply. God bless x

[Hidden]

I recognise the intolerance to petty worries so much - I could not stand it when people spent time moaning about ( to me) utterly minor and mindless stuff. It is partly because I felt so weak and scared and then went through this soaring phase where I felt I had survived and was undefeatable - it is a 'high' you go through and life becomes so vivid and incredible, where you feel gratitude and relief. It doesn't last long, that part of the grief/ healing and I am slightly more tolerant and patient now but it is a rocky, interesting and challenging journey - this brain injury thing....

[Mishqueen]

I don't even half the symptoms you have (I had VM), and I'm already finding out the strength or lack thereof in some of my relationships. The trouble with fair-weather friends is that you don't know which ones they are until the bad weather comes.

I'm 3 months in, and my symptoms are finally starting to improve a smidge due to a steroid I'm taking...My auditory nerves were directly affected by the VM, so each and EVERY sound triggers the cranial pressure, migraines, dizziness, seasickness, and so forth. I can't drive, work, watch tv, read a book, etc. Electronic sounds are the worst: telephones, audio books, any voice over a mic...I'm beginning to lose my cognition, the longer my healing stretches out. I don't know how much I'll lose before I start to get stuff back.

My husband is on his last nerve with me; he's not even sure all this is real. I really hope our marriage makes it through this, but I'm worried to be honest. Many of my friends have stopped contacting me or responding because they don't like my only communication form (texting short lines) or what I can go do with them (sit in a quiet room and chat softly). It's not that they don't love me, I just don't fit in their lifestyle anymore. I'm sure they have plans of getting with me as soon as they find the time to do it my way...you know how that goes. As time goes on, the bonds or lack of bonds will solidify into a New Normal.

And it's ok. Life changes and morphs into something else all the time. There are new relationships to be had who embrace your needs/expectations/self the way you are now. Counseling will help you to move mountains. Take solace in new routines and hobbies, and remember you have a whole crowd of supporters here. The sun will come out again, and you will get to see your new world. This is what I tell myself, too.

[Innis in reply to Mishqueen]

I hope all works out for your and your marriage. I would suggest finding some outside help to support. I am regretful that me and my partner did not work. it was the most fulfilling relationship I experienced. Since attending a nuro psychiatrist who is also acting a councilor I found it helpful, not only am I coping with anxiety but finding out how poor my cognitive skills are. I know now that its all very real and a part of me wished I went earlier. Some how I feel my relationship would have worked. Take good care and seek the assistance as a couple x

[sorba]

Glad to hear you feel you are recovering. Probably your illness was a shock to your friends so you must ask them to be understanding. when you feel more energy returning you could try a new interest and meet new people, good luck Sorba