Does anyone else feel like they're a huge b... - Meningitis Now

Meningitis Now

6,770 members2,106 posts

Does anyone else feel like they're a huge burden after suffering from VM? Also, struggling to look after young children after this illness?

sparklybuster81 profile image
10 Replies

Hi all. It's heartbreaking to read all these terrible experiences, but such a relief to know I'm not alone! I had Viral Meningitis in Jan, and hearing other people's experiences, it seems that I was very lucky that my GP not only came out to visit, but also immediately recognised the symptoms and sent for an ambulance, sending me with a letter, advising the hospital that I should be tested for Meningitis. I was given an MRI scan and a lumbar puncture, which confirmed VM. However, I was only kept in for one night and was sent home whilst still extremely poorly. I have a 3 year old daughter, and at the time, my son was just 4-1/2 months old, and I was still breastfeeding. 

Since January, life has been quite difficult. After leaving hospital I had no idea what to expect, as I was told VM is not serious and I would be better in 7-10 days!! I did not leave the house for 5 weeks and spent most of this time in bed, just getting up to do as much as I could with the children, but after half an hour or so, even getting back upstairs was a huge struggle. I did start to improve, but each time I thought I was getting better, it has always been short-lived, and I keep ending up back in bed. I get headaches, back and neck pain, terrible joint and muscle pain, particularly my arms and extreme fatigue. I wasn't a very patient person before VM, but now I feel like I'm snappy and irritable all the time. I struggle with concentration and sometimes can't stand too much noise. I also have a blocked nose all the time now, but I don't know if this is related.

The advice I keep being given is just to rest, but this is almost impossible with a 3 year old and a teething baby, who sometimes screams for hours in the night. My husband and my parents have been amazing, and I have been completely reliant on them, as sometimes it has been impossible for me to look after the children. However, sometimes I feel so down that I think they would all be better off without me! I feel like such a burden, as my parents are spending so much time looking after my children, and my husband has to work all day and then come home to me wanting to go straight to bed, and he's been doing much more getting up in the night, which I always used to do. He is really struggling to deal with all of this, which makes me feel so guilty.

Idefinitely have very special bonds with both my children, but I feel so angry that my bonding with my baby boy has been interrupted by this horrible illness. I had to stop breastfeeding, as I didn't have the strength, and have spent far more time apart from him than I did when my daughter was a baby. I feel like I should be stronger for him, but I just can't be! On one hand I do know that things will get better, but some days I can't see any end to this. Its almost 4 months for me and it's been such a rollercoaster. I wish I could know when it will be over, so I can start enjoying life again!

Written by
sparklybuster81 profile image
sparklybuster81
To view profiles and participate in discussions please or .
10 Replies
Jeffery profile image
Jeffery

Hello, I have also felt like a burden at times and that I am not contributing to family life as I should be but it is what it is, a very humbling experience. I try not to hold on to any of the negative experiences as I have a tendency to do so. I am a little over 2 years post bacterial meningitis. I also count my blessings every day that I am here and able, in my small ways, to be there sharing in my family's life. I may not have as active a role as I used to but I am taking baby steps forward. Still loving life. Best Wishes, Jeffery

Blim profile image
Blim

You have been through a horrible time but its not your fault and I know it's hard but try not to beat yourself up. I had surgery when my daughter was 1 month old ( nothing to do with meningitis ) and as it went wrong spent 21 nights in hospital. Not nice to be separated and unable to care for her but we both made it through. In - laws and my husband had to do so much that I thought I should be doing for nearly a year. The reason I am going on about this is my daughter and I both made it through and we bonded as well as my son (who was 2 at the time). It is a worry when you are going through it.

I had BM a year ago and still get really tired. I have to sleep about 3 afternoons a week - would probably sleep more if I didn't work 2 days a week. Like you soon after coming out of hospital I was sleeping, or in bed, most of the day. I also get very short tempered with my children (9 and 11). I am not very proud when I get short tempered but thankfully my family are great. Just last night I had to tell them at tea time I was really tired and felt I had a very short fuse. They were great - although it's not always great. I know your 2 are too young to understand but your family might. My experience is it does get better but it is a long haul and there are no guarantees how far you'll get but you are still there for all your family.

If you haven't rung the menigitis trust do - they are great listeners and helpful.

Hope you have a good day today.

Tiga profile image
Tiga

1st of all what a great Doc you had,. thou been told VM is not serious (whats that all about)

and I would be better in 7-10 days ( i take who ever told you that had never had VM)

headaches, back and neck pain, joint and muscle pain, seems to be the aftermath of VM

after VM been a patient person i feel is one of the hardest things, you feel tired and in pain so you become upset and sometimes angry this is true of VM AND of yes snappy is the norm

concentration will take time, as your brain is going threw so much.

Re noise this too is a VM after and bright lights . blocked nose you can use VIC to help this, and also VIC rubbed on your temples will help, try if you can to cut down on pain killers as this may bring on more headaches, i know easy said than done, but i am a great fan of the VIC :)

you say sometimes you feel so down that I think they would all be better off without me! I feel like such a burden. THEY WILL NOT!"!!!!!!!!!!!!!!!!!!!, and please keep that in mind, Depression is one of the key after effects after VM, if you do not want to go back to your doc for this, go to Holland and Barrett and talk to them about depression. if you had been in a crash, and lost your legs, or scares you could see the damage done to your body, but with VM there are no outer scares, and i feel this is why we get so upset, but trust me you have been very ill and you MUST take time to heal, please let your family help me, i bet if they had the option of you dying from the illness or looking after you, I KNOW which one they would take

re Breast feeding, and not having a bond, if you had adopt a baby, would that baby love you less because you did not breast feed, i think not, you been alive to be his mummy is all he needs, your repression is playing games with your mind, talk to your doctor TALK to anyone

you say you wish It could be over, so I can start enjoying life again! my darling you will, but first of all you must let go of the guilt, and get some help for the depression, and allow others to care for you..

each day make a list of things you want to do, and see how much you can do, you do not have to finish the list, this will help with you memory, and able you to focus,

have you read meningitis-trust.org/mening... find out more about what you have been threw, print what is you and let your family read about it, many people just have not got a clue and why should they, but you can help them to understand which will help with your guilt

the key is, DO not give up, take each day as it comes, let go of the past and only look at the day, lets face it you have taken the 1st step by coming to this site and we are all here for you, YOU ARE NOT ALONE anymore you also have us here :)

Canada3 profile image
Canada3

Oh dear, its such a heartfelt message to us all. I do perfectly understand how you feel and sometimes when my husband and I talk about our "later years" and what our plans are if one of us goes... I feel I would be better just shuffling off sooner than later... I too have been such a burden I feel. Yes Tiga you are right that they would much rather you were here, but the irritable, tired me is not the person they signed up for either. Depression is definitely a side effect I am sure, GP's are not any good usually (apart from diagnosis) and to say you should be better is just crazy. This is a brain irritation and it takes as long as it takes to get better. There are many ups and downs, you will get better and it will be slower than you would want I am sure, it has been for me. Now at almost 4 years post VM I think I am plodding along quite well and then "pow" I am just down again, fatigue, sleep disturbance, night sweats, flu like symptoms. I know that I just have to ride the storm (and use this wonderful resource of like minded folk) until it improves again, and it does. I feel so sorry for you having 2 small children and not being able to just rest whenever you need. You probably need to think what you would be doing if it was your husband and how worried you would be and want to help him in whatever way you could, you would nev er count the cost, and I suspect neither will he. We never know whats ahead of us and it may be that when you are well, tyou may need to look after him for some reason, you will just do it joyfully, even if you are tired, so youy must allow him to do the same. Whenever I say "sorry" to my husband he always admonishes me, as he knows I would never choose to be like this, and I am afterall ,doing my very best to get better, as I am sure you are too. I hope you start to feel better soon, but please please take it slowly, has a habit of "biting you in the bum" if you dont. Live in the moment, sufficient for the day.

sparklybuster81 profile image
sparklybuster81

Thank you so much for all your kind words of support and encouragement. I hate to seem like I'm moaning, but just wanted to paint a true picture of how things have been. It may not seem like much to you, but I really do appreciate you taking the time to reply to me, and it means a lot. Hearing about other people's experiences really does help, as in some way it allows me to let go of some of the guilt, even if only for a short time!

I suppose what doesn't kill us will make us stronger in the end. I'm just going to try to focus on one day at a time, as I think I've been trying to look too far ahead and getting frustrated about all the things I haven't been able to do. I will try to accept the bad days and trust that it will get better, and be thankful for the good days!

Tiga profile image
Tiga in reply to sparklybuster81

moan as much as you want, we are here for you hon, also your comments and story will help others which is what this site is all about :)

Vespalover profile image
Vespalover

I had VM and it took me a full year to get back to rights. I was OK after 6 months but needed a couple of naps a week. They too told me I would be better in 10 days but that is not the case for this disease and I think the text books have not caught up with the anecdotal evidence from the sufferers.

I know it is difficult with children but try and take a nap during the day. This is the only way that your injured brain can truely repair. It can not repair while listening, seeing or thinking. Like a broken leg, you have to imobalise it as much as you can to give it chance to recover.

I too hated light, sound, couldn't scroll on my computer as I couldn't track moving objects well. It all improved in time.

I also got very blue....I felt I was a burden....I wanted to be better but your body has to take time. VM is a life threatening illness. I did not get that untill a friend of mine who was a Sister at a headinjury unit jerked my chain and told me that I was seriously ill and it was she who told me that it would take 6-12 months to get over it......she was right.

I also bought a 'Keep Calm and Carry On' mug. Whenever I feel blue I make a cup of tea in it and it helps....silly I know but....whatever works.

elthompson profile image
elthompson

Hello, I had V.M in March this year. My recovery is still somewhat raw. Concentration is a huge issue for me, so if this message seems rude or blunt it is not meant to be, my writing skills have altered somewhat. Especially as my three year old son is stood right next to me playing a tablet with loud noises and chatting ten to the dozen, it makes my head spin. I cant offer any advice, I just wanted to say i feel exactly the same, i feel I am being a terrible mother. I have snapped at my three year old about three times this morning and it is only 7am .... and he hasnt even been naughty!? I love him so very much, but just cant handle early mornings, whining, tantruams ... etc ... being a mother we need patience, have found i have none of this. I too feel a burden, the guilt is eating me up! I hate myself as my partner takes our son out on 'familly days' (which are designated days for the three of us) without me, i go to bed! We have had our struggles with money and jobs and health like many over the past couple of years, and my partner was just looking to get back into work after a year off, and me being ill has set him back. I am very lucky to have him home with me, but I feel I am stopping him being his full potential you know! I dont want this message to come across as it is all about me, i just wanted you to see you are not alone in your feelings. I only just discovered this helath unlock page, and this was the first post I saw, and straight away i could relate to you, and i didnt know any others felt like me in this matter. so thank-you for putting it out there! Sorry i have no advice, but perhaps knowing you are not the only one can be of some comfort xx

bevcarlydave profile image
bevcarlydave in reply to elthompson

I had VM last june and still find it hard to cope with tiredness,forgetfulness and depression ,I often snap at my hubby and 7yr old little girl but I know deep down that in time I will overcome this terrible illness and bad headaches , like the saying keep calm and carry on ,count to ten and rest when your body tell you to takecare x

sparklybuster81 profile image
sparklybuster81

It is a huge comfort to know I'm not alone and others feel the same as I do! Thank you all x

You may also like...

Anyone else suffered similar after affects to VM?

and really struggling with what at present I believe to be after affects. I have just been away...

Support for a newbie

I was released. I have been off my medicine for a month now and have been struggling. I will be...

Mollaret's Meningitis.

viral meningitis. I have been confirmed as having Mollarets meningitis/encephalitis. I can get sick...

Viral meningitis cause fibromyalgia?

memory has gone down a bit and sometimes I struggle with getting the right words out. Constantly...

Viral Meningitis recovery experience

with viral meningitis after contracting influenza about 3 weeks ago. I don't really remember much...