Work recovery & help: Hey guys i just thought... - Meningitis Now

Meningitis Now
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Work recovery & help


Hey guys i just thought it’d be interesting/help to know;

•who/how many people have gone straight back to work?

•Anyone that has never gone back to work?

•Had funding/help as they couldn’t go back to work?

•Anyone that went back on reduced hours and made it back to full time hours?

•If anyone couldn’t make it to full hours and stayed on low hours?

•Anyone thats had help to fund for those extra hours?

•Anyone who made it to their full hours and is now struggling and

•anyone who’s done this journey back to work with struggles and what were they?

•also a random one... anyone who’s got pregnant/given birth after meningitis?

Thank you for any input/replies!

All this helps me to try and peice myself together!

Lots of Love! 🤗

24 Replies

I had meningococcal, septicemia, & DIC. I stayed home, on the sofa, for a full 8 months. Would have stayed home longer but I was running low on savings. While in the hospital, I had rec'd the "No Longer Employed" letter from my Fortune 500 company (for whom I had worked only 4 months.) Thankfully the company took me back...even though I couldn't tolerate the pain of shoes (wore just thick white socks) and occasionally blood would seep from my now mangled "toes." I was in inside sales and fortunately pant suits with very long slacks were in style. (1970s)

At work, I NEVER mentioned the constant foot pain. I knew that companies are in business to make a profit...not to advance social programs. Because I felt incredibly grateful that they took me back, I was ALWAYS 100% loyal to them and FREQURNTLY worked 100 hour weeks for no additional pay. Within 2 years, I was promoted 2 steps above any other woman in the company. Over the years my foot pain continued to dissipate and in 2 years I was able to tolerate an open-toed sandal. Upward mobility continued and I will forever be grateful to that company!

It's now been 41 years since I was stricken. My feet still hurt 24/7...but the foot pain has dissipated a little every single year. Yes, it DOES get better!

Stace30 in reply to ignoreit

Hey ignore it

I was off work 5/6months from first going in hospital to going back on one hour a day i really struggled and am constantly ill and picking things up so i’ve just been trying to plod on and get over things and think i will get better/stronger but now 24months into work i really struggle its like I’m torturing myself every day with pain and discomfort and frustration etc and i really don’tknow how to keep going with it 🤗

ignoreit in reply to Stace30

I'm so sorry to hear that you're still having HUGE problems, after 24 months. I completely understand your daily "discomfort & frustration"...but what do you mean by "pain?" (Mine was severe foot pain.) I wasn't clear re when I went back to was 9 months from the day I entered the hospital. Everyday after work, I went immediately home and laid on the sofa to rest. I picked up fast food on the way home so I wouldn't have to cook or grocery shop. I was VERY lucky to have a 5 day work week and I did nothing but rest every Sat & Sun. Had no "outside work" life...but I gave 100% at work. Two years later I was promoted to a national position that required constant air travel. I was so overwhelmingly thrilled to be the first women to have an executive position in the company that I was able to push through the pain. When staying in the hotels, I gave 100% in the job and then returned to the hotel to order room service and rest. For years.

With our condition, I don't think we can have a life with both work & fun. Not for about 5 years. But DOES get better each year!

Stace30 in reply to ignoreit

Hi ignore it

Thankyou for your reply

I feel like everytime i try to push myself i get run down/ill and catch/pick something up that knocks me back.

Thats what i am doing now... i go work and then struggle home/picking up any bits of essentials, then i do nothing but sleep/rest. I can see it puts people in positions loved ones and work and especially as its something thats not clearly seen i’m constantly judged/looked down on as a liar/exaggerator... whatever it is they think. I’m always frustrated at myself and then others fir not seeing how i am; everything effects me so much more than it did before/your average person.

Like you say... I don’t have a social life, i can’t and if i go out i make sure it’s somewhere i would be able to find a seat. I can’t believe how we talk to people on here and it’s like my mind is being read... i’ve said for a while now its one or the other, i cant have a life; its either i go work and get paid to exist or whats the alternative never go again and go down a road of disappointing others, having no money, not supporting anyone, being a financial burden and then not being able to have anything :/, i’m really fed up of it.

I feel like i’m watching the world around me while I don’t move :(

Im so happy you are where you are today well done!!! Its sounds really good!

What do you find helps you these days?

Do you find any work/life balance now?

Thanks for your reply! 🤗

I had pneumococcal bacterial meningitis and was off work for 6 months. I went back to work full time at that point due to necessity, or I would have been terminated (after 26 years with the same company). I struggled daily to make it to work, to do my work, and to not call in sick. After 9 months of doing that, I finally was able to take early retirement and quit my job. It became almost impossible to get up and get to work daily with the constant headaches. My work truly suffered. I suffered. My boss was very unsympathetic. I am now much healthier. I sleep when I need to sleep. That seems to reduce my headaches. I still have side effects, but they don't seem as pronounced. Susan

Stace30 in reply to sdjohnson231

Hey sdjohnson

That’s sounds similar to me but unfortunately i am 32 and can’t not have an income coming in I’m torturing myself everyday through struggling pain being uncomfortable stressed out painful wrists etc etc just to earn money and i really don’tknow how long i can last :/ 🤗

sdjohnson231 in reply to Stace30

Are you in the US? Have you thought about applying for disability benefits? I know that's not an easy road to go down, and most people are denied the first go-round, but you won't know until you try. I've heard that having an attorney help you through the process can help. Best wishes to you. Susan

Stace30 in reply to sdjohnson231

Hi sdjohnson231

Im in the uk

I suppose ive ignored all that so i can be independent n get better but i dont seem to get better and just struggle:/

I returned to work once after5 years. It didn't work.

Stace30 in reply to Veezee15

Hey veezee15 👋🏼

How did you find it? What stopped you? Have you just gone down the track of benefits?🤗

Hello Stace. I was very ill following VM and struggled to get back to my job as it is very demanding and generally I work approx 12 - 13 hours daily and most of any day off doing all the paperwork . I was made to re contract my hours so I am still on reduced hours and then I have got 2 other jobs to supplement. Whilst I was still off sick (18 months) I applied for income support but I only received this for a couple of months £70 per week and now I am having to pay the tax on that back. It was stopped after a couple of months because even though I had been diagnosed with constant , very painful chronic migraine and a spinal injury , I could lift a pencil and an empty juice container and so deemed fit for some kind of work! I was told to quit my current job as it was too demanding and to get some other kind of work. My doctors didn’t think I was fit to return to work at the time so I was off work without any money.

So now I still have chronic migraine but manage my main job on very reduced hours ( funding won’t allow me to put hours up but I would struggle with the demand) and the other jobs I do which are flexible.

It has been life changing !

Stace30 in reply to Bonkitty

He bonkitty

Sorry to here your situations,

How do you do these jobs? Is it physical or mental?

I got up to full time but now i’m started to go back down and trial extra days off, its so hard for me to get up in the mornings and be motivated/have any energy throughout the day, i almost need to either work every other day or the days i work to work less hours :/,

I have heard about things like that but those kind of tests don’t help any situation as you could be diff by every min day or week.

I just don’t know what to do anymore, i feel like i need a mostly sit down job but i can’t always go on a computer or consistently move my wrists and like you say a lot of problems aren’t shown up on your black and white basic hospital/disability tests. I am down a lot, I don’t talk to people much, i’m very unhappy and worry a lit about the future.

Thanks for listening🤗

Bonkitty in reply to Stace30

Hi Stace30

What I did when I couldn’t get back to my job was I did on line training in something I have always wanted to do .. dog training and I have qualified and now I do this to supplement my main job . So I look at it as an opportunity that I wouldn’t have had if I hadn’t got meningitis .

I try not to dwell on the migraine and continue doing things with it but rest as well .

I also work in a shop for 1 day. My main job is demanding but ok now I am doing few hours and the dog training I can fit around how I feel and I enjoy the shop and it gets me out and talking to people and is stress free. I started in the shop just over a year ago to see if I could take on more activity and then enjoyed it so much I stayed. So I keep very positive. These jobs get me out and talking to people and often I forget about the migraine.

My life changed after VM.. in many ways for the worse but also in ways for the better and I focus on that.

I am training to climb mount Ben Nevis this year!!! Determined that I will do it and keep living life.


Stace30 in reply to Bonkitty

Hey Bonkitty

Thanks for the reply!

That sounds really good and positive!

Hows the training for ben Nevis going?

I did snowdonia on a good day; just walking for hours and a million breaks/rests in-between haha

I felt like it was an accomplishment i did it with friends and loved ones.

I hope everything carries on well for you!!! 🤗

Hi I was off work for 3 months initially then went back on diff duties for 2 days a week but after 8 weeks I could not return to my Substantive position as it was too physical And I had lots of pain fatigue and headChes. I went home for the rest of the year about 8 months in Total. Then I attended an independent medical examiner and cleared for work as normal. I had a gradual return over 1.5 month. It was hard but I worked full time for 3 months then resigned to commence post grad study worked part time elsewhere. Had terrible migraines neuropathic pain and found neurologist who steered me towards pain treatment for neuropathic pain with ampiyryptyline and then beta blockers. This was after I had medication induced migraines and 16 days withdrawal in hospital.

On preventatives still Botox cefaly device strict ketogenic Diet gym program and ampytrptyline beta blockers and Triptans when migraine breaks through.

I have full time job and completed post Grad masters but it involves huge discipline and management. It's five years since viral meningitis so you do get better. Never give up try diff drugs till u get results it will get better

Stace30 in reply to Claudeminh

Thanks for your reply/input claudeminh

I still struggle and sometimes don’tknow what to do for the best; at times I definitely need to take drugs but they also mess my head up too.

Recently my lethargy/fatigue was humongous; i stopped myself from crying every morning having to get up to go work and so depressed going in work everyday and trying to work when my energy is completely none existent and i cam barely do anything :/ 🤗

A load of bloods came back normal and i got told its prob just a side effect; honestly cant explain how bad i felt!

Hi Stace30,

I became ill with Bacterial Meningitis at 12 weeks pregnant at the end of April 2017. I had been a full-time working Mom until that point. I went back to work part-time (4hrs/day for 5 days a week) in August (4 months into recovery). Believe me, being pregnant is tough enough but I was extra exhausted. Chasing a 3.5yr old around and recovering from a traumatic illness wasn’t easy. But I have an amazing support system who helped me through it.

I worked at a junior college in Northern California and I went on maternity leave in October. I was on a medical leave with full pay when I was recovering from meningitis. After giving birth I resigned from my job bc it was a difficult medical year for me and I had complications after giving birth because I was on Lovenox blood thinner injections.

Financially, my husband and I were at a place where we could afford for me to stay at home with our kids. I’m feeling so much better and my energy level is almost back to my normal. The only residual effect is the mini strokes I had during the episode left partial blurriness in my right eye. My eye doctors believe my eye will fully recover. But the happy ending to this story is I survived and I had a very healthy baby boy. I hope this helps.

Stace30 in reply to shorty52992

Hi shorty52992

Your story Sounds very traumatic and a blessing! Im so glad you are having it much better lately!

I just don’t know how to make my body work at all, i might see a chinese medicine doctor see if there is anything different there :/

Thank you for reply

The more feedback/help/stories i get the more i hope to figure things out for my self!

I hope you are well! 🤗

shorty52992 in reply to Stace30

Hi Stace30,

I wish you the best. It doesn’t hurt to give it a try. I was open to acupunture while recovering. Good luck to you.

I had 4 months away from work. After this I gradually increased my hours and days over maybe 6 weeks. I then returned full time and have done so since (10 years now!)

Everyone is different but slowly slowly worked for me....

Stace30 in reply to gb93616

Hey gb3616

Do you not have side effects that take over or bouts of lethargy or lack of strength?🤗

Hi Stacey I had viral meningitis in July 2017. I have been off work since July. I got paid for the first 6 months and now I'm on unpaid sick leave. I'm hoping to go back to work in the next couple of months but I still get headaches, fatigue, dizziness and muscle pains. Driving causes me headaches. I honestly thought I would be back at work after a couple of months but I had so many issues which thankfully as time goes on are starting to resolve. I also am interested to know if anyone else got pregnant after meningitis. Edited as I read now that you are back at work. Sorry it's so difficult for you, I have a sense I'll be the same when I return. And yes like you because I look fine everyone thinks I'm fine. I have a two year old who at the beginning of all this I couldn't look after for even15 minutes due to severe dizziness. This has majorly improved and I can look after her for full days now in between the childminder taking care of her. I suppose look at the positive strides you've made and maybe look into other forms of work - work from home, part-time, retrain in something less demanding. You deserve to have a life outside of work. It's hard to deal with the massive change this has brought to our lives but be kind to yourself. I find the more I worry/fear things now it's bringing on a real depression so I find mindfulness and meditation help.

Stace30 in reply to kawt

Hi kawt thanks for your reply!

It sounds similar to my situation although i don’t have kids.

I also agree i have been vert depressed and without realising it does make you worse mentally and physically so i am trying to not get so down.

My ankles hurt a lot and my arms and wrists hurt and give way im Just struggling thinking of things to do at work or alternative jobs that arent so hard on me and that will except i will be ill at times or at a slower pace etc as when it comes down to it what employment really has your back after the initial phase back:/? 🤗

Hi Stace30. I'm 60 and had viral meningitis over 2 years ago, and am still struggling with insomnia. I attempted to go back to work about 6 weeks after but failed due to short term memory loss,balance and co ordination issues,fatigue,and general cognitive dysfunction. I was a lab tech and a teacher. I had to self fund a lab test recently for melatonin and cortisol and the results were hugely interesting. My melatonin level, the sleep hormone[in my saliva] at 2 am was 4, the normal range being 10-50. My cortisol level was 11.7, the normal range was 0.0 - 5.0 . Research showed that both impact on the other to exacerbate[worsen] each.

It appears that one or two changes possibly have happened stemming from my meningitis.

1/ my pineal gland producing the melatonin is no longer working due to

[a]the 41Degree C temps during the meningitis, or

has been contaminated by something like maybe heavy metals or pesticides liberated either then or during my loss of 10 Kg following the disease so that the contamination is inhibiting the proper working of the gland.


2/ my body has become desensitised to melatonin due to the incredible levels of melatonin naturally formed during the disease process, and no longer responds to the lower levels that are normally produced[/required for sleep.


I asked my doctor for melatonin supplement [prescribed normally 3 mg/night for insomnia but for me 9 mg/night]. Initially it gave me 13 hours sleep in a row. I was ecstatic! but it slowly wore off in effectiveness. 10 hours, then 8 hours, 4 hours and back to 0 at times. Eventually it made little difference so I now combine it with paracetamol or NightTime,or codeine, or zopiclone[ not all together of course], and herbal teas/herbal sleeping meds such as valerian,passionflower,chamomile,zizyphos, 5-HTP,skullcap,hops,tart cherry,peppermint leaf,energy medicines such as sleep drops, minerals such potassium and magnesium[citrate,amino acid chelate], and vitamin B3 and B6[ in morning only], and even a few brandys!

I have found so far that what works often is to change things[meds]daily as the body seems to become tolerant of each and nothing works constantly and reliably.

I have now just sent away another self funded test sample, post being on melatonin supplementation, to check if my melatonin and cortisol levels are within normal and this should let me know if the problem is related to 1/ or 2/ as above.

I'm also taking an herbal adrenal tonic mixture containing irish moss seaweed,chickweed,horsetail,sarsaparilla,cayenne,ginger,kelp,liquorice,manuka,

marshmallow,yellow dock,white oak bark,cinnamon oil,clove oil,jojoba,lime,rosemary,citric acid,and iodine. The theory is that if you sort out the adrenals which produce the cortisol, you then have more chance of reactivating your pineal gland.

We shall see....... in the meantime I'm barely surviving financially through a small sickness benefit[ available in New Zealand], my savings, and the help of family and friends, and luckily I own my house with no mortgage.

While I'm alive there is always hope that I can sort this out! And when I figure it out I will tell it to the world!

Good luck to you all!

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