Over a year and still can't overcome some o... - Meningitis Now

Meningitis Now
5,256 members1,759 posts

Over a year and still can't overcome some of these issues!!

I was diagnosed with VM 03/1/2018 I still have the head aches but they aren't as bad some day's are worse than other's, I still get the stiff neck and a lot of pressure and pain where my neck and back of the head connect, the exhaustion has not gone away I feel like It eill never get better. I also have fibromyalgia, vertigo and anxiety and suffer from depression, I feel like a walking disaster! I'm tired of being tired I'm tired of being sick, the kids always want to go somewhere or do something and I can't even gather the energy to do it, they always respond to me now your always tired mom! Or your always sick. This has ruined my life!! And when its hot out as soon as I feel the heat hit me it feels like it's instantly draining me, I move slower more trouble breathing or catching my breath, yard work is almost impossible to do before I am exhusted and panting like I just got done running, I'm trying to be productive but now even getting out of bed to take a shower is a challenging task. I feel defeated! I am 36 years old and act and feel as though I am 65. I just want to be normal 😭

16 Replies
oldestnewest

Ive been struggling with the same issues you have and VM.. iam in my 18th year now. Had to apply for disability in 2015 after getting shingles and then getting chemical meningitis.. my kids always like to remind me that i forget things..everything got worse after 2014.. my life has changed and i hate it.but iam finally learning this is the new me and i have to accept the new me.. iam missing out on a lot of shit ..but theres nothing i can do .. i have been put on medical marijuana oil drops and it helps alot.. but there will never be something to make me 100% .. not many doctors are connecting the 2 together..iam turing 43 i have a cane when i go out for stability and mobile chair for outtings.. i feel like my 86 year old grandmother..your not alone..

Reply

Thank you for you response I am so frustrated I just don't know what else to do

Reply

Made me feel grateful I’m not a young parent ,and that I’m retired. And great empathy for kellzlucky7!

Reply

you need to read Becky Dyvoraks book on WORDS … it will help you also the one on HEALING, that maybe even more so helpful, don't be negative I know exactly what your going thru , we all do ,, yes its hard but we will get there in the end AS WE WILL FIGHT a lot of us are going to try the ANTI VIRAL VITAMINS too, so with being POSITIVE, TAKING VITAMINS, and believing in yourself that you have made it this far things are not going to get worse, at the time you went thru this it was the worst there isn't much pain that can get worse than that terrible head pain, theres no way its a headache its tremendous swelling in the meninges and we all got thru that so we can and will fight anything now you can talk to all of us, and we know your pain please try and not get negative and push yourself to be as positive as you can, ive had it 4 times and im 64 and I got thru it , so im sure you will dear, take care and please be strong being a mother is challenging at any time but im sure you can do it, if you can purchase these books online from book depository they are pretty cheap they have helped me no end … goodluck x

Reply

Thank you I will look for the books! I appreciate all the support from everyone on here it means a lot to have other's understand what I am going through.

1 like
Reply

I had near fatal VM in 2002 and one of the first lessons I learned was that 'normal' is a fluid thing, normal post VM may be something different to normal pre VM. Wanting to get back to normal is, well, normal but recovery from VM can take quite a long time (or two weeks if you listen to the doctors) and the key to recovery is to rest, rest and when you feel better, rest some more. Don't try and overcome the after effects by doing too much because if you do it just bites and sends you back to square one. Now I know as a parent that's easier said than done but you need to work with your body not against it.

Unfortunately in the modern world we are used to things happening quickly and it's the same with illnesses. The oft quoted saying 'I don't have time to be ill' doesn't apply to VM, you need to give your body a chance to recover. Try a week of just doing the minimum you can and see how you feel. When you get a chance then rest, even if it's only for 5-10 minutes. From experience VM recovery only starts when you stop trying to get back to pre-VM 'normal' but if you give it time then it is possible to make a pretty good recovery.

I have been left with some after effects and I have learned to adapt and cope with them, I've changed what normal means to me. I've also been able to do things I wouldn't have dreamt of before VM like three stand alone half marathons and three half ironman triathlons so it's not a life sentence of illness. You just have to give it time.

2 likes
Reply

yes I was told my VM I can die from the type I have also … and to get to the hospital and warn them of this … I only found that out in 2014 my last full blown vm….

Reply

That is amazing that you were able to do the marathons, congrats! I rest a lot I'm actually in my bed a lot but I get up and do things as I can. I thought I was getting better. 2 weeks ago the headaches were almost gone I felt good had some energy. I took advantage of it, a week later back to square one like you said. Head aches pressure nausea, fatigue I became a little discouraged. I had depression before the VM but afterwards it was way worse. I try to take it day by day but some qre worse than other's. It does help that I can talk to all if you and have someone understand and not look at me like I'm making this up. It is hard for other's to understand.

1 like
Reply

Hi Kellzlucky7,

As I read your post this morning, I could feel your desperation and weariness of dealing with life, post VM, snd wanting SO badly to feel normal and healthy again.

You are NOT alone!!!!!!!

I feel the same..

I am post VM almost 14 months. (4/12/18)

I, too, am blessed to be a Mom, to my beautiful and healthy just turned 5 year old little girl!

She keeps me going, as I am sure your kids keep you going!

I understand wanting to take them and out and do fun things, but just rarely feel good enough to do that..

Just the daily care of them, the house and keeping the cooking going, is all we can do right now. Some days, that is also hard to do.

I feel like some days, I am just surviving.

We are home a lot, most of the time.

About every other day we get out to buy the groceries or meet a friend at a park to play.

I live in Northern Texas, USA, and it is getting hot now!

So outside time is limited, and I also feel drained after being outside in the heat.

Everything feels different now post VM, my body reacts differently to everything!! Temperatures, or even catching a minor cold, it took 3 weeks to get over.

The only thing I can make of it is that our bodies after having VM, are weakened.

Hopefully in time, which appears to be years, it can recover.

I understand feeling hopeless, never being normal again..

Never having the energy like we used to have.

I miss feeling like my old self.

I struggle a lot, and pray daily for a full recovery. I included you in my prayer this morning as I had just read your post. I will continue to do so.

Prayer is powerful and can pull us through.

2 weeks ago, I had the best week I have ever had post VM! I felt nearly completely normal!!! It was wonderful and I was so happy!

But then I started feeling unwell again.

The roller coaster of this recovery is difficult to cope with.

I understand your feelings!!

Again, you are not alone!!

I tell myself, that there are brighter days ahead..

I also try to remember that although I don’t feel great, I have improved, and am nowhere as sick as I was.

This illness is a scary one to have.

It’s so long term. It feels as though it will never come to an end.

We just have to do our part, take good care of ourselves, Pray, ask God for help

and for healing, He will do the rest.

Take good care.

You are in my prayers.

Hugs

2 likes
Reply

Reading your post resinates with me too. I am a mum of a 5 and 8 year old. I'm 16 months post VM and just been diagnosed with functional neuroligical disorder brought on from VM.

Take every day as a new journey, a new path of how you can heal, rest and be positive. Comparing life before VM leads to misery. Whilst we may long to be who we were life even without VM would have changed us. Children do adapt. The hardest thing I've found is when you are in so much pain you loose your smile, the laughter, the music. If you can on your good days find 3 good things just the little things you can do together. They matter the most and can lift your spirits that you can still care and be with your children. You are doing amazing be kind to yourself and take every step you can to embrace each day as a good one on your journey. Their will always we bumps and bends but keep the sunshine and smiles in your heart. They make the journey just a little less rough xxx

2 likes
Reply

Hi I’m 7 years post vm and am finally in last year feeling loads better. So that’s closer to ten years than five recovery time! But that feels about the right time for something that impacts the central nervous system. So hang in there, as Jonad says, it takes a long time indeed. I still get migraines and sore neck and fatigue. But feel really ok a lot of the time and exercise a lot now. Initially could hardly work for 2 years. Ended up addicted to codeine and severe migraines. Got Botox and still take it. Work full time now and got lots energy on weekends so generally lots better. But decent five years of sickness before that. So , if u look at it as a decent ten year recovery time, you are early into it. Just hold fast, it will get better.

Reply

Oh I meant to say don’t despair too much, keep the faith, take the preventives drugs if u can for pain. Don’t push through pain, get it sorted as it will create chronic pain if u leave it. Exercise in small amounts. Be mega food healthy, low inflammatory food. And find quiet things u can enjoy. Your old life might be gone but the new one is coming. You’re still young, you will get better, your cells are powerful and they will regenerate. Just hold on, we all know what you are going through. You’ll come good,and you will still be young enough when it does.

1 like
Reply

Oh yes I wanted to say get a neurologist and see them every few months. Also, get pain reduction drugs for neuropathic pain. They can work but you might need find right one. It will stop the weird nerve pain.imstill on endep 7 years later cause it stops the nerve pain and I’m happier without pain.so I’ve decided to live with the drugs cause my whole life is better with it.

Reply

Thank you!! I have seen a chronic pain doctor and nurologist but havent in 5 months due to my truck breaking down and me being out of work has been a struggle. I seem to get the run around quiet a bit with the doctors. It's actually discouraging like they don't understand or believe you. Thier always like keep moving take ibprofin and just wait. It's hard to wait. And it is so nice talking to all of you, who understand and can relate. The being tired part really hurts me as I used to be super active. I worked full time driving a delivery truck for a snack foods company would sell and stock stores all over the city where I live, went to the gym and did martial art, and when I was home I was taking care of the house and our children we have 9 but only 8 live with us my fiances daughter lives with her mother. Sometimes I ask why me? It was the first time in my life that I wasn't struggling that I had a good job and was making 4,000 a month! I finally felt like my life was coming together for my family and I, and then it was shattered landing me in the hospital for a week and in bed at home with a pic line and severe sickness and nurses for another 2. Sometimes I feel like I am ok but then I end up sick again and I just get sad. I try to work out but it is a struggle I rest a lot thank god the kids are at school during the day cause I need the rest. But I feel so guilty. I am in my room in my bed 60% of the day I don't get to do as much with them and I can't handle all the noise and commotion from all the kids like I used. I feel like such a bad mom, I know I will never feel normal like I used to, but I wish I could just for my kids.....

1 like
Reply

I was diagnosed 1/23/2018 and I feel the exact same way... daily headaches (some days more tolerable than others), severe neck and shoulder pains, constant fatigue and exhaustion...sometimes too many people talking at once even overwhelms me!

I used to be fun, and peppy- my favorite thing to do was go to concerts but now I'm just a lump of constant aches and pains and the lights are too bright and the music is too loud, even with my fancy ear plugs. The Dr's told me it's because of my age (I turned 40 a few days before I got diagnosed) and that the VM caused hormonal changes but all the meds they've tried didn't correct any of this so that tells me they really have no clue. I'm a walking science experiment..try this drug, do this treatment, up this dose, dial that one down... it's so frustrating, especially since NONE of it makes me feel any better. I am so thankful to my spouse and kids for not being so fed up with me at this point, because I am very fed up with myself. I am so grateful for this forum because it's the ONLY resource I've found where people have similar symptoms and they didn't get better in 7-10 days, like the Dr's told us we would.

1 like
Reply

Yeah I definitely can relate it is awful! The forum helps so much, it is hard to explain this to doctors or people cause no one understands unless they are going through it. It's like living with an invisible disease. I had depression before but ever since the meningitis it has been so much worse, getring out of bed and doing anything has become a challenge. I don't want to go to the store or be aroumd people my anxiety goes up like you said to many people talking is overwhelming, loud noises are annoying. My nerves were damaged when I got the meningitis so I am super sensitive tattoos were to a point of being unbearable when I used to be able to sit through a session and take it. But they are slowly growing back and it is getting better, for the tattoo pain nothing else though.

Reply

You may also like...