Life after effects..

[Izzat]

Hi folks im post meningitis and encephalitis after 9 months survived. Deals with life after effect is not too easy and left me out with trauma issue. Before i get ill i have been work in Aviation and do travel a lot, now im already get terminated due to poor condition. Still now im having a balance issued, cannot walk for too long, stand up more than a minutes and extremely fatigue issued. One month after discharged i always had panic attack which cause me abnormal for breath and prefer to be alone and get isolated. Apart from that, i have sensitivity of light which is at night, to solve the problem im always turn off the light and stay in the dark but luckily im not in the dark side😥😂.I noticed after several months its improved even not 100% but mostly 70% up.My panic attack had gone and i can control myself. I have read some of folks here struggled with headache and nausea and its lucky for me i dont have it all. Glad to hear in UK they have own community meningitis.now which is help a lot. Im live in Malaysia by the way its hard for me to find the fund and do the cranial sacral therapy here. Im still have a question why my GP didnt tell me life after effect with BM and they consider its just a normal sick after you get cured, for the first month im easily depress and how im gonna take a control with my miserable life. Lucky enough for me i just found out this website can be use a good tools in order for me to get rid out and not just only me get suffered from this illness. What are the biggest concern for me now in still thinking for my future..am i able to be back for work again? Mostly i have read out here they are quite struggle to handle for the job and this is the thing keep me worried as my age now 32 years old and i believe this is the great time for people out there to work hard and earn for survivor. Im really miss my old back either in my workplace, the aeroplane and meet the people cross the culture. Thanks for read my note and im sorry for taking your time to listen my feeling.

[lbuckie]

Izzat, I also had encephelomenigitis. I am 3 yrs post this March. Everything you are going thru is normal. You have to adjust to a new normalcy. You'll be able to work again just not a full 8 hour day. Pace yourself, allow your body and brain to recover. Rest and patience will be your best bet. I can't drive at night anymore, shopping is difficult due to so much going on around me but I do what i can do and try not get down on myself. This site has been so informational for me and literally has given me hope. Stay on this site the community will guide you.

[Izzat in reply to lbuckie]

Hi Ibuckie thanks for your replied..,do you mind to tell me what are the causes you can't drove at night? In your situation now.,are u able go to work?

[lbuckie in reply to Izzat]

Hi Izzat, driving at night for me would get me disoriented, unbalanced, agitated. Bright lights over-stimulate my brain causing anxiety. I was working 7 hours a day but I was coming home with vertigo, losing my cognitive skills so my neurologist has me working 4 hours a day. My ct scan shows my brain was normal on the outside but my brain has 3 areas is scar tissue on the inside. This is permanent. Fortunately I have a great support system I work in a doctors office and all my friends are nurses & doctors.

[Stace30 in reply to lbuckie]

Hi ibuckie

I can’t cope with life and working and I’m about two years since first contracting it I got up to full time and now I’ve dropped a few days I can’t cope and like you as soon as I get home I don’t work!... I can’t stir the tea my arms go, my brain doesn’t work even in a normal convo I get agitated and snap!

Has the few hrs of wrk a day helped you? Does it release sum?🤗

[lbuckie in reply to Stace30]

Hi Stace30

Working less hours has helped me tremendously. And there are certain parts of my job that I can do at home. But in all I work no more than 5 hrs. Otherwise, I get anxious, frustrated and my brain feels like it collapsing.

[Izzat in reply to lbuckie]

Hi Ibuckie..I'm glad to hear u came back to work..,and managed did it for 7 hour. Lucky you have supportive environment and your colleague's between nurse and the doctor who is understand well your condition..did you return to work less in 4 hour time or still continue to 7 hour? My last ct scan when I was hospitalised with meningitis and the doctor said result are normal..,just for query..do you request from your doctor to have ct scan in addition and found the scar in your brain area? Maybe the scar will turn out after a year cured from BM..

[lbuckie in reply to Izzat]

Hi Izzat, I work 4-5 hours a day. I start in the morning as my energy level is higher. I see my neurologist every 6 months. Even though I am 3 years post encephalomenigitis w/septicemia I still have issues. Ct scan was done on the outer part of my brain, I had an EEG done as well as I am sensitive to light and sounds and patterns. I also had a brain pathology testing done to see the inside of my brain and that is where they found scar tissue in 3 areas. I asked for test as I needed to understand what I have and what injuries I incurred. How it was going to affect my life. Keep positive and be your own advocate.

[Izzat in reply to lbuckie]

Are you able to use computer in your work area? At the moment I'm struggle to use it..,even after 10 minutes I will become headed and my brain try to force me to stop..it's really distressful...not so much I can do.,I love to watch movie at cinema with my friends but now it's really hard to look at the screen.

[lbuckie in reply to Izzat]

Yes, I use the computer but I'm on it for 20 mins then I take a break for 20 mins. I've learn to delegate tasks and address the ones that need my attention. Izzat, it will get better you need to adjust your life a bit. You have the strength within you! We are al I'll here as support

[Izzat in reply to lbuckie]

Hi ibuckie..how's your day going? Hope everthing goes well. Any new progress u have made since after our conversation those day? Mine slightly much better but still on recovery period. The major problem is i cant cope with heavy sound and light.,it will causes my brain exhausted. Would you mind telling me where you live?

[lbuckie in reply to Izzat]

Hi Izzat,

I understand about certain noises and bright lights. Those things are hard to manage as the world won't change for us. I avoid certain places. I also have a tendency to keep my issues to myself. My husband and friends can tell when u am bothered and they are very good about protecting me when needed. I did have a couple of outburst this past week due to too many hours working, we became short staff for the week so I worked a few 7 hr days. But I'm back to normal. I live in Rancho Mirage, Ca. 15 minutes from Palm Springs.

You're going to go thru different situations you need to know what you can manage and what you can't. Talk with friends and family so they know your situation. BTW ear plugs and sunglasses help even at night. Sending good vibes to you.

[Izzat in reply to lbuckie]

You inspire me to be the best version of myself. I look up to you. I feel that more people should strive to have the strength and passion that you exemplify in everyday life. Have you having physical disability that affects your mobility?My leg having weakness after walking a short distance and the inability to walk as far and as long as you'd like to can be frustrating and even depressing. Have you been travel to other country after contracted this illness? I want but i get over the fear of traveling after so much happen.

[lbuckie in reply to Izzat]

I do have some physical issues, I get head pain everyday, it's like when I first had encephalomenigitis like a knife piercing. I also have chronic neck pain but I use lidocaine pads if I truly need them. I can walk for not for several hours as I get dizzy and alittle disoriented. Do travel, just make sure you being items that will help you cope with unexpected issues. Ear plugs work, dark sunglasses and recognize noises that you know bother you.

[Hexy]

Yes I really sympathise with you, I'm same, depression is part of the symptoms i contracted this debilitating disease when I was 35, I'm now 60 and still suffering headaches balance problems memory loss, I started work slowly (part time) even that was very tiring, each person is different. By the sounds of it you need to go see your doctor again to make appointment with a Neurologist for help. It's ridiculous how we are sent home and have to find out for ourselves. The doctor's aren't sufficiently informed about after effects. It's very much a neglected area. A very important part of our treatment isn't finished! I wish you good luck, don't give up, go see your doctor. Kindest Regards Anita

[Izzat in reply to Hexy]

Hi Anita..thanks for read out my story here.,glad to see you are in good health eventhough still have major problem. Im agreed with you most of them neurologist they are not aware and give the biggest concern when deal with people who had vm/bm/me..life after effect is really tough especially if you want to start begin your new life..till now im unable to work more than 4 hours.,it will causes brain fog and extremely fatigue..but we are lucky because we still alive.