Meningitis Now
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Struggling with my recovery

I had BM back in early Feb. I spent 9 days in intensive care, another week on a ward and was then discharged. To nothing! No plan or any idea what or how my recovery would be. I then (as soon as i could walk to a friends car!)went to see my GP who thankfully was knowledgeable and understanding of my condition. I also self refered myself back to the physiotherapy unit at hospital and between us we have established some structure to my recovery. I am aware that I am somewhat fortunate with my recovery in that I am able to walk small distances outside and do my physio excercises 4 times a day and have now been given the ok to go swimming and also have been referred to the gym to aid my progress. So externally things are improving. Unfortunately internally my recovery is much slower. I have constant pressure all over my head, get dizzy for about 10 seconds each time i get up, my short term memory is shocking! I cant concentrate, I get my words mixed up, struggle to find words, and my sense of frustration is increasing. Both at these things that i now have and the situation in general). I have become snappy and occassionally very unpleasant to my other half and 13yr old daughter. I have no filter or cut off valve and this makes it even more frustrating as normally im a normal relaxed man and i hate what im doing to my family. They are amazingly understanding and supportive but there is only so much anyone can take. I know that the biggest factor to my recovery is time. I attend a local holistic centre for relaxing techniques and am waiting to see a counsellor to see if there is anything they can help with. I was wondering if anybody else was struggling emotionally (i dont feel ive yet accepted whats happened to me yet) and if they are what are they doing about it. I have spoken to the nurses on the meningitis now phoneline who are great but was wondering what else may be out there to help? Has anyone had similar problems and how did you cope? Anyone a partner of someone with advice. Any help would be appreciated as things are not getting better yet and we are struggling with it all.

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I'm sorry to hear your symptoms Mark. I was completely debilitated from BM in 2013, unable to walk, no light, no sound, unable to turn my head in any direction, unable to bend or to bear any vibration or sudden movement and terrible pain from pressure in my head. It took more than two years before I could walk and much longer before I could have any light or noise so we had to live in complete silence and darkness for years with me just lying still all day and all night, unable to sleep because of the pain. I was told it would never go, but I am a very fit and active person and simply wouldn't accept that. Whenever I felt up to it, I would go for a walk, then gradually improved so I could jog a few steps and over the past 3 years have improved myself to the stage where I can now go to the gym, run, swim...! It is a matter of time as you say. Be kind to yourself. Eat well, sleep as much and as often as you can and don't give up hope. I wish you well in your recovery. Already you are much better than many of us considering you're at such an early stage of recovery, so take great heart from that and keep improving. x

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Thanks for your reply Shannon. I really do appreciate how fortunate ive been considering some of the experiences shared on this forum, yours included.

As I said time appears to be the main factor in all the recoveries so on we go. My concern is the effect its having on my family as I am definitely not the same man I was before. Does anyone else feel the same? What do you do to help?

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Hi Mark I am sorry to read of your road to recovery. Everything you have said is so similar to how I was when I first came home. I had to learn to eat and walk light sensitivity, and short term memory loss

I am 7months in recovery, I still have headaches, light sensitivity and short term memory loss. I still get impatient and frustrated when I miss place things. I am unable to cook and my husband only works 4 hours a day now. He has been a wonderful husband but every now and then he cries wishing our lives would go back to normal. When I came home after spending 4 weeks in hospital , i spent another month in bed sleeping. I think the more you listen to your body, the more you will heal. Others have mentioned cranial massage but it is hit and miss if it works for headaches. I also have to wear sunglasses every where i go and my bedroom has been totally blackened out so that is my sanctuary

I wish you well in your recover!!!

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I absolutely agree with Jenny. Listen to your body and rest. Be in a quiet, dark environment as much as you can. It is incredibly tough on loved ones. My husband has been incredible over the last 5 years (just into my sixth year since BM) and I doubt I'd've got through this without his unfailing love, care and support. I'm a neuroscientist so should have answers, but we don't know what really causes this ongoing pain so it's hard to find ways to alleviate it. No medication has ever helped me (apart from opiates in the acute phase). Time and rest is essential. I find that meditation helps as does yogic breathing. Keeping a calm and settled frame of mind really is important to allow the damaged areas to heal. Go well with your recovery; some people recover more quickly than others. To have survived at all is something that those of us who've had BM should applaud ourselves for. Being fit and healthy initially pulled me through (I had pneumonia & pleurisy at the same time as the BM) and it sounds like you're fit too so that should stand you in good stead for regaining your health. The first two years were dreadful for me as I couldn't even step outside the door, couldn't go in a car, no tv, no radio, no music.... Very limiting and impossible for my husband to do anything much with his life. Although I still cannot go in cars and cannot listen to radio or music nor watch tv, I am able now to hold up a book and my eyes are ok again so I can read and use the computer. Each achievement needs to be celebrated, so make sure that when you realise you can do something that yesterday or last week you weren't able to do, then give yourself a pat on the back and thank those around you :)

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Hi Mark

Reading your situation its very like mine I had BM March this year I took myself to hospital 999 as the day before I saw my GP who said I had trapped a nerve in my neck and spent 14 days in hospital and came out with nothing, no direction no follow ups. not even a hearing test as I am deaf in 1 ear

i too am getting very depressed and snappy with my partner and 9 year old daughter I cant do anything much I struggle to walk up/ down stairs cook a meal and as for my memory well I don't appear to have one I can walk into a room and not remember what I went there for.

I have a great friend who is a nurse and they have said much the same as others

Listen to your body, take it one day at a time, write things down ( i have post it notes all over the house) I have no help at all which doesn't help being left with a 9 year old every day of the easter holidays i really wanted to die as I got so frustrated ( but she was awesome) but I am taking each day at a time, some good, some awful, but its 4 weeks since I came home and am finding little things like making a drink and not dropping it a boost, being able to get out of bed in the morning with less pain in my legs if they actually work ! than before ,I was told to keep a diary and write everything down so that when I am having a bad day I can reflect on the little things I have achieved.

I didn't realise till now how serious BM really was so I thank my lucky starts I made it through

You sound a strong person so grab the little positives and don't aim too high

Good luck x

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Hi Nuttytart thanks for your reply. I too am having trouble with my ears. I have had 2 bad infections and as yet still havent been able to attend my audiology appointment (as recomended after meningitis) to see what if any permanent damage has been done.

I am also finding travelling in a car painful as the vibrations seem to gather in my head. Which is unfortunate as most of my appointments are some distance from my house.

I like you, didnt fully appreciate how serious BM is and am still very much trying to come to terms with it. I like the idea of leaving post it notes around the house. Just little prompts to help with normal things that i now forget, so thanks! And you are absolutely right. I must try and focus on the positives. And i have one massive positive and that is that i am here. I only recently found out that i very nearly didnt make it. The fabulous team in the ITU had tried to extubate me for a number of days but my body wouldnt work. My family were told to prepare for the worst (something i would never wish for them) but for whatever reason that very morning when they tried again i came round and stayed awake! So i have plenty to be thankful for despite this horrible illness. Thanks again and good luck with your recovery. It sounds like we are on a similar timeline.

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hi So pleased you have found some positives i didn't even get an audiology appointment till I rang up doctors last week as they forgot !!!! Yes we seem to be in a similar timeline

keep in touch and we can track progress together

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I will post on this thread from time to time and will keep you informed of any progress. Good luck!

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Keeping a diary from week to week will help mentally as you improve. When I become depressed my husband reminds me how fow I have come.

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Hi jenny thanks for your replies. I like the idea of a diary (so long as i remember to fill it in!). I have been told to lower my expectations over the speed of my recovery. Setting more realistic goals so that i can actually see some improvement rather than aim too high and feel that im failing or not improving at all. Keeping a diary will remind me of the progress i have made and hopefully that i am improving no matter how slowly. This hopefully will ease at least some of my frustration. Thanks for the advice and good luck with your recovery.

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Hi Mark, I am sorry to hear about your ongoing problems. I contracted BM and E-coli through a spinal drain after spinal surgery in 2010. Spent a month in hospital and unfortunately like you have struggled ever since both mentally and physically as well as still being on heavy medication 7/8 years later. I am certainly not the same person. As ShannanLouise says, be kind to yourself, rest, eat and sleep as well as you can. All the best and feel free to keep in touch. Take care x

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Thanks for your reply. It really is good to touch base with people who know how you feel and what we are going through. If we all share our experiences and document it then hopefully we can pick up some bits of information or ideas that can help each other through this long, difficult journey.

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I’m 44 with two teenage children. My partner / boyfriend of just 6 weeks is currently in ICU with bacterial meningitis sepsis. He’s been there for 3 days now and they are starting to reduce dependency on machines. I’m so scared for both of us.

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Hi Htj I cant imagine what you are going through. Just be there for him. Take heart by the fact they are reducing his medication already and be positive. Im wishing for a good an outcome as possible for you both.

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Sorry to hear about your partner. I hope all goes well in his recovery x

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Hello Mark, I am so sorry to hear of your struggles. And everyone else's on this forum. My daughter had a suspected case of VM 2 years ago. She was 13 at the time and I had never seen anyone so ill, and I thought at one point that I might lose her. She missed months of school; and while the acute, early-onset symptoms have mostly disappeared, she is still struggling. She suffers with chronic headaches, which at times are debilitating. While she is mostly well enough to live a relatively normal life, she has episodes of severe symptoms - mainly headaches, vertigo, joint pain and debilitating fatigue. To me it seems that her VM symptoms return whenever her body becomes physically stressed, i.e. a lack of sleep or fighting another virus like a common cold. As we speak, she is going through another bout of symptoms and have missed 3 weeks of school. I have shed many tears in private! We live in Australia, and most GPs have no idea what to recommend or suggest - I realise they generally don't have a lot of experience in dealing with meningitis; and most believe VM is "just a virus that will go away in a week or so"! We never got a confirmed diagnosis because our doctor was too inexperienced to realise what we were dealing with. My daughter was rushed to hospital twice; but by the time an ER specialist decided it was likely VM, her fever had broken and her stiff neck had gone away. I opted for her not to have a lumbar puncture as I felt the risks at that point outweighed the benefits - I was told that it was unlikely that the virus would be picked up at that stage! Well, we all know that meningitis in any form is a hideous infection that takes a long time to improve. I stumbled across this site in another frantic search for answers - at least in reading posts like yours, we know we are not alone; and in reading many of the replies, we know there is always hope and that many people do improve with time, and some even recover. I have found an experienced naturopathic herbalist, and my daughter has been taking herbal anti-virals which do seem to help in managing the severity of some of her symptoms. But I'm guessing that time will be the greatest healer. I wish you all the best in your recovery - here's to better health all round!

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Thanks for your reply Nikki. It seems there is a similar story everywhere that very little is actually known about meningitis and even less known about the after effects which appear indescriminate and wide ranging. I wish you and your daughter all the strength and happiness you need to get through this time. She is young and given time im sure she will improve to lead a perfectly normal life. All the best to you.

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You seem to be doing a lot to help yourself, from my experience things get better with time. The thing is to do things gradually. Perhaps a change of scene like a short holiday would help, good luck Sorba

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Yes time does appear to be the biggest factor in everyones recovery. As much as i would love a break from the monotony of this very slow healing process i am unable to travel for more than about 20 mins in a car. The vibrations gather in my head and i find it exhausting. Thankfully other members of my family are able and have been able to get away for brief spells and having a change of seen. Which i am thankful for as we are as a family very much going through this together.

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Hi all I just wanted to update my post with regard to struggling with my recovery. Unfortunately my recovery appears to have levelled off. I am still unable to work or drive or do many of the things i could before. My frustratin has not really eased especially as an old shoulder injury has resurfaced and is also now hampering my physio! My GP has now referred me to a rehab centre specializing among other things in neurology and physical recouperation.

I am starting to accept that this is going to be a long process to recovery but that people should push for help when you need it. Everyone is so different after having this brutal illness (which i assume is why there is no set plan for recovery - although having read some of the stories on here, the medical profession needs to catch up and realise the seriousness of the illness and its wideranging and serious consequences).

You must push for help.

Regards to all

Mark

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Hi Mark (and all),

Your last post was 4 months ago, so I hope you are seeing more improvements in your condition. Your posts, and the others here, make me doubly aware of just how lucky I’ve been. I was with my wife and teenage son on our 7 day Greek island holiday when I started feeling unwell on just the second day. Assuming the unpleasantness was just down to gastritis, it wasn’t until the 3rd day that someone twigged and had me rushed to hospital on the mainland. There they diagnosed bacterial meningitis with sepsis and had me plumbed in to everything on ICU. It’s a whole other “hospital culture” there, but professional and shit-hot at their job they were.

I was discharged two weeks ago and flew home to the UK the next day.

Eight kilos lighter, much weaker, with aching joints and migraine type headaches - I struggle to see how I am going to return to work as a landscape gardener anytime soon, given the hard labour that that involves. That said, having been pretty fit before the illness, I keep telling myself that I can regain suppleness, strength and stamina if I build a slow but steady momentum in that direction. I have my first Physio appointment next week, but am already doing everything I can to get my Self back (in between naps and/or tearful collapsing-in-a-heap.)

Good luck to us all. 🤓👍

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Thanks for your reply. Getting BM abroad sounds like my worst nightmare! (Especially as we booked a holiday a week before i got ill and are due to fly in 4 weeks -i have an appt on the 10th oct when i will find out if i can fly!)

To update you i actually started my phased return to work last week and itr going ok.

I am now seeing a neurology occupational therapist and neuro psycologist to further help my recovery (i dont feel i am where i need to be as i felt my recovery levelled off some time ago. Not being refered to a specialist straight from hospital and missing out on 3 months has undoubtedly affected my recovery)

I have had to fight for everything even physio and i just thank my lucky stars that my doctor was understanding and has been behind me all the way

You will see on here so many people talking about time. And it is so true. It will take longer than you want to recover. Overdoing it will set you back so set realistic achievable targets for yourself. And learn to just accept who and how you are for now.

im physically much better now (still have tightness in my head, dizzy spells and numbness in my fingers) however my main issue is my brain! Not surprising given whats happened but i am so frustrated at feeling so different and really hope that the neuro team can steer me an a path to improvement (still early days as ive only had the initial visit when they thankfully said they can definately offer us help. I say us because all the family have been through it with me (from being told i may not make it to being how i am now has been a horrible journey for them too)

My advice would be just go with the flow, dont be too hard on yourself because its a brutal illness, and push like hell for everything you feel you need.

best of luck to you and everyone for your recovery

regards

Mark

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