It's a year. Get over it.

Why does everyone proceed to say that I used to be fun? Why won't you drink are you afraid of a headaches? You look pale you should run? Strange how after a year, you suffered fatigue like that? Your eyes still can't be bothering you? You had an infection in your body, get over it. There's nothing wrong with you. They put you on meds now? Neuropsych... Are you depressed? Maybe if you started dating you'd feel better? Why do people feel the need to finish my sentences, when the fatigue hits and I slow at getting my words out. I thought I was doing great, I pushed myself back to work, I have good days, weeks even and then some bad.

It's frustrating at times. Do I want to be out, partying and meeting new people?, definitely. Do I want to being my A game to work and smash it yes. Do I want to join in group conversations yes. Have I tried to go on as normal not talking about pain or how I'm feeling. For sure!

How has everyone coped being back in the workplace? Any advice on how to handle the multiple questions and critisms or lack of patience from people when having a bad day. I find I'm becoming more and more introverted, and sometimes have a good cry on my walk home.

My job requires a lot of brain work, travel and long hours. I loved my job, I was only in this new role a few weeks before I got ill. But I tried to get into this role for years in a few companies.

24 Replies

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  • I work it IT so using my brain is necessary. I sometimes work long hours and travel 3 hours a day. It’s bloody knackering. I had meningoencephalitis nearly 10 Year’s ago and I’m much better now.

    I get tired a lot so when I can I get an early night and rest a lot. I still do things I used to do just recovery takes a bit longer

    Here’s the thing you survived a very serious illness which kills some. Other people may well thing you just had a headache I’ve found that most real friends and your family will get to understand.

    1 year is nothing really in recovery terms at least in my case. Take it easy don’t be to hard on yourself factor in rest times you’ll get better and you will improve.

    After a while I started thinking “wow I survived, I survived meningitis, what else am I capable of?” (Providing I get enough sleep 😂)

    Graham

  • Sleep is key and only something I realised the past two weeks when fatigue really knocked me for six. Thanks for your response G.

  • Previously I thought fatigue and tiredness were the something, I now know that they are not. I went to see my Dr about being tired and the said to me if you feel tired, sleep. Best advice I ever had, it kind of gave me permission to sleep! I know you can't always just fall asleep, but I find now, watching TV in an evening, before dinner, or before I go out I can literally have 15 minutes sleep and I feel like a new man. Now, I could never do that before, if I slept like that I feel like cr@p, but now, it's very helpful.

    If you're hungry you eat, thirsty you drink, but you don't always sleep when you're tired and if you can master the short nap (in my case I didn't really master it, I just didn't have a choice :-) ) it might help...

  • Coming up on my one year anniversary at the end of this month l am a lot better don't get me wrong but l stepped down in my job, I'm still part time in fact did an extra shift last night and boy do l feel it this morning! I to left my social life and drinking ability behind me, small groups for short periods and stress so much about it. Sometimes l feel like this year has just been watching my life flush down the pan in slow motion but then l read a letter like yours and realise that there are lots of us fighting back from the same thing and l am still the same person to the good friends who have stuck by me and not once said are you not over that yet. Hang in there we will get there don't think it will be easy but you'll have plenty of support from this site.take care

  • Thanks. I get great comfort from this site. Recovery isn't linear and based on mechanisms that are unclear. I'm learning to adapt and also rest when needed. Thankyou for commenting. X

  • Please give my 28 year old daughter's story a read on this site. Rosie S's Story. Here lies sugnificant success (from what we know so far), for complete recovery from VM!

    She suffered for near on two years before discovering meningitis now, subsequently trying cranial massage by visiting an independant cranial osteopath in her area.

    All the symptoms you are experiencing are pretty much similar to what she suffered. It seems the key, and recent breakthrough, is releasing the spinal fluid which VM leaves a blockage for...and enabling it to flow again through your body, particularly your head.

    There are some on this sight who have now given it a go after reading about it, and after just a couple of sessions, felt considerable relief.

    In the last few weeks Rosie and I have been contacted by the media, news papers and radio to tell our story of this potential breakthrough!

    We now feel we want to help as many poor people who have suffered this dreadful illness for which before now seemed there was no light at the end of the tunnel.

    Good luck and please keep posted how you get on if you try this amazing treatment. Rosie coupled this with acupuncture, having alternate treatments once a week, now a couple of months in. Xx

  • Thank you I have booked an appointment next week for one and will keep you posted on how it goes. Thanks to you and Rosie for sharing x

  • Ooo good luck, yes please let me know how it goes! X

  • However, reading further I see you had bacterial meningitis, whereas Rosie contracted the viral strain. Here's hoping it brings you some relief though.

  • You don't say the strain of meningitis you have had but I'm guessing it's viral. I went back to work nearly 6 months after nearly dying of VM and it was tough, no two ways about it. What I learned was you have to adapt what 'normal' means and by that it means prioritising things that you need to do, and doing them even if that takes all your time and energy. That way you will be less tired and can rest easier knowing that the essentials are taken care of. If you try and go back to how you before the illness then you are going to lose every time. Whilst you have had a physical illness there are also mental health issues to deal with, I found myself feeling very depressed grieving for the life I had before VM and just wanting to be back to 'normal'. At times it will feel like you're having to say the same things over and over again but pre-empt the days when you're feeling tired and depressed by saying to your colleagues that you have had a serious illness, the medical profession still does not take VM seriously, and that there are days when you won't be able to do the things you used to do but you endeavour to do your best. If people know what to expect from you now then they tend to be more forgiving of the bad days and more appreciative of the good days. I have written several blog posts on this site about my recovery from VM please feel free to click on my profile and have a look and I hope they help. One of these is called 'oh no it's angry dad' which describes the pain and frustration I felt of having been robbed of so much by an illness which just kept sapping my energy. I remember saying 'I used to be able to do so much and now I can't' but it isn't always going to be like this, there is light at the end of the tunnel but to get there means listening to your body, resting when your body says rest and recognising that things have changed no matter how painful that feels. I'm 15 years post VM and have done things I never thought I could prior to the illness like 3 half ironman triathlons but remember VM doesn't understand time so there are no set time limits about when you should feel better, so you're a year on who says you should feel better? I am now a community ambassador for Meningitis Now and part of this voluntary role is peer support for others going through what I went through. Please feel free to send me a message via this site and I will happily share my email address with you, no obligation and it's as much or as little support as you need. Good luck, Jonathan

  • Thank you for your response. I had bacterial meningitis. I was in ICU for 6weeks non response for days. Im still attending neurology outpatients and waiting on neuropsyc. I feel like I'm being labelled lazy bit what my colleagues don't know is that I'm working evenings and weekends in order to try and keep up with them. It's frustrating. I will read your posts and thankyou for taking time to respond.

  • No problem, then there's even less reason why they should be frustrated with you, bacterial meningitis kills people on a regular basis and it is psychologically and physically tough on the body. If you're in the UK try ringing the Meningitis Now Helpline on 0808 80 10 388 as they can really help with the things you're talking about. The offer of peer support is also there as it sounds like you're going through what I went through albeit the cause is different.

  • jonad724 ~ best thing I have read in a long time...."VM doesn't understand time". Now if we can just get all the doctors to understand that, to understand that every case is different, that every person is different and that despite the virus "running its course" in 7-10 days this by NO MEANS should imply that the patient be all better just because the virus is technically gone. I was in the care of Infectious Disease docs at Johns Hopkins in the U.S. and they still had no good answers to 'when will I feel better'...they just fall back on the virus will run its course blah, blah, blah. The medical community needs to be able to say that they really don't know the answer to that. Some people bounce back after a couple of months, some take years.

    I am less than 5 months post VM (Shingles Virus). At 3 month post I was diagnosed with breast cancer. I am exhausted, stressed, overwhelmed. This board and the wonderful people here help a lot! I am not alone. We are not alone.

  • I am sorry that you have been going through such illnesses. I wish you full recovery and strength. I think its shameful that the assumption is that virial is quick to get over than BM. I had BM but through reading I know that the after affects are just the same and recovery takes just a long. It's natural to feel overwhelmed, with what you are going through. I agree the medical community need to be able to talk about the after affects better. I want to be informed. My relationship ended 2months after leaving hospital, my bf who was with me the entire time remembered my first outpatients appointment where a intern (teaching hospital) said I could go back to work, resume normal activities and go out again. When I tried by did I have difficulties. I couldn't remember any new info, I was vomiting with the lights, peoples checks shirts affected me and I'd blank after a drink. I was a wreck, emotionally. But because the intern said I'd be fine that on that one particular appt it was surely all an act on my part. My then partner could not accept on the following when I was told differently. Several outpatient appt since and we know there is serious affects!

    You are very brave and seem like a fighter. I cope you get the right support from your medical team. Please take good care of yourself xxx

  • My brother is suffering from Tubercular Meningitis. It's been two months since he's taking the medications. But sometimes he suffers from severe headache along with neck pain. When this happens sometimes he talks nonsense also.

    Are these things normal with this kind of patients?

    What are the solutions?

  • I can really follow on from what others have said.

    I had listeria meningitis, was in a coma for 2 weeks, hospital for 10 weeks and lost so much weight and muscle I looked like a famine survivor, I also initially had total memory loss, and had to learn to walk, dress, drive again.

    I don't think the effects of meningitis ever fully go away.

    I had counselling from Meningitis Now (then the Meningitis Trust) to deal with depression and mood swings and REALLY needed help. The hospital and social services were pathetic at providing any real aftercare.

    It took me more than a year to work out how I wanted to live my life after meningitis.

    I did make 2 rules.

    Get out of the house every day.

    Do something you enjoy at least once a week.

    These seemed achievable and still work for me now.

  • I can relate to the depression and mood swings. I was alway moody tbh but had control over it. Now it's very hard to hide my frustrations. Say boo to me and I will run to bathroom and sob. I did see privately a neuro psych but I felt it was not right for me. My neurology team have referred me and I've been waiting 2 months now. I'm trying like everyone else to rebuild life again. I lost my partner due to this and my support network here. I ensure I go for long walks daily. My medication makes me sleep better, I was suffering insomnia badly when I first left hospital. We are all a courageous bunch but it is sad that the people around us, lack the humility or empathy to demonstrate a little more patience. I left a meeting once after standing 40 minutes. I have balance issues and was tired. I heard one pass comment on it and it cut the socks of me.

    How has your memory improved? Mine certainly did post six months. It was very hard to learn and retain new information. It can be promblem though when overly tired.

  • Innis I am sorry you are having a hard time. I got sick in August so there are many others round here that I am sure can give you some wonderful insight. I just wanted to say I can understand how you feel as all of my friends and family expect me to be completely ok already. As far as theyre concerned Im overreacting, I made it all up, Im stretching it out for attention, etc. I used to be so active and now my neck pain is so bad most days im just trying to hold my head up without crying. As I am over in the US there is really no knowledge or resources like this one. Doctors just want to blow you off. People just want to blow you off. “go to P.T., go see a chiropractor, quit talking about it, etc” The one thing I have learned from this site is listen to your body. If rest is what you need then take it. If you push yourself you are going to make things worse. I have started taking magnesium as it is supposed to be helpful and also upped my other supplements. And also my favorite part of the day is when i get to use my tens unit which stimulates massage and my heating pad. Thats my heaven right now. ;) I hope things get better for you!

  • It's a shame that you found a lack of resources at home. Indeed, this all happened when I was in tenerife. The hospital, intensive care team and neurologist was amazing. When I got it ambulance back to Ireland I was admitted to top hospital for head injuries. I'm still under their care but I feel at times that I am just being shrugged of when I mention the after affects. It's normal, it's an injury to your brain. I want advise from them and how best to help my employer manage me. My manager is brilliant, a people manager but I feel like at times a burden. I'm lucky to be originally from northern ireland and have spoken to meningitis now when I am off and up home but certainly can feel your pain with getting the right advise where you reside. The fatigue was a concern, as it was apart from finally leaving hospital the first time it hit me the way it did and a year after. When I went to my GP, fully chargeable in Ireland unlike home she said it was because I have a tight muscle on my neck. And looked up my nose. It's ry frustrating and I can't help but think at times that it all is in my imagination. Leaving the GP I felt deflated and upset. Take good care of yourself x

  • When I was 33, I contracted meningococcal, septicemia, & DIC. For the next 8 months, I was either still in the hospital or alone on the sofa in my apartment, still in a tremendous amount of leg & foot nerve pain. This was the early 1970s and before contracting BM, I was determined to become a female corporate executive.

    When I could finally walk, I returned to my job (complicated sales with a Fortune 500 company.) Sometimes I wanted to scream out in pain. BUT I knew sympathy would NEVER help me advance in a career...so I hid my pain. NEVER mentioned it! NEVER! A year later I was the first woman to be given the company's Regional Sales Mgr position. I had to travel a lot...and again NEVER mentioned my pain. A year later, I was promoted to National Sales Mgr. Now it was CONSTANT travel! And of course the pain & fatigue from my BM were still there. Here's how I handled it: I had zero life outside of work. In the hotels, I ordered room service and rested all evening. Zero alcohol. Zero social life. My life was work and rest (sleep.) I knew BM had stolen my energy so I had no choice but to accept this new life. It worked! Each year the pain dissipated a little. Now retired, I still watch my schedule and have learned to sometimes say 'no' to wonderful activities.

    I think 1. VERY rarely mentioning my pain

    2. Getting more rest than most people require

    ...have allowed me to live a full, wonderful, post-BM life.

  • Wow!! Amazing story and certainly something I would strive to be. I work in top tech company and travel is a must but can't fly long Dr's orders. . The tiredness cripples me when I do and along with that my recall with be bad. I know this will improve with time. I'm a sales engineer. I love the role. Leaning about the technology, customising applications and then presenting to large groups. Execs like you. I will learn to manage the fatigue better. But its hard to hide the memory issues when they arise. After reading your comments though I'm determined to rise above it and the corporate ladder! Of you can, so can I.

    Thanks for the motivation :)

  • Ouuuuuuuuuu, sales ENGINEER! Fabulous!

    I was a lowly sales rep with the company when I contracted BM so after 8 months...when I returned to work... many co-workers & bosses asked, "How're you doin' now?"

    Pure & simple, Innis, I didn't tell the truth. I pretended that everything was fine...no pain, no after-effects.

    Because you & I have "sales personalities", people assume we're party animals. When someone would ask, "What'd you do over the holiday?", I'd respond something like, "I'll never tell" and laugh. It never occurred to anyone that I rested in bed and skimmed "How to Improve your sales technique" books.

    The good news is that everything really DOES improve each year. EVERYTHING!

    (Sales ENGINEER...I'd have killed for that expertise!)

  • Thank you for the advice. No wonder you were such a success in your career, such a great attitude!! One I will adopt. Pretend all s fine, smoke and mirrors I can do that!! Sales technique books, brain training apps and lavender tea all the way! Xx

  • I wasn't much for going out and all that prior to VM. People, in fact my wife at times, say that I just don't know how to have fun. Most of my life. So, for me, post-VM, it gives me more of an excuse to be a homebody. So I'm taking up woodworking as a hobby. Just taking it slow, easy, steady pace work. Building apparati to help with heavy lifting. Otherwise, just using it as meditation time. And, maybe a little profit. Other than that, I just work my regular schedule, try to maintain a peaceful environment, keep my faith in Christ, raise my little girl, and try to make my home beautiful.

    It truly is a whole new life. Embrace it. Learn to love it. For me, yeah I get frustrated at times but in the end, it could be much worse.

    I've never had any true friendships in my life, except my one bud from HS (40 years ago now). Except for my wife, family, and cats, I'm pretty much used to being alone. And I am pretty much ok with it.

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