Bacterial meningites

[Pcris]

Hello everyone,

My boyfriend is now home. He did a full recovery, thanks God! But he still has headaches an pressure in his ears. Do you think this is normal?

Life has not been very easy. He doesn't remember Christmas or even before that.

I feel like someone took my memories away.... he is very often in.a bad mood and sometimes I don't know how to deal with it. Life changed a lot and sometimes it's really difficult. Now we just take one day at the time. And everyday I just feel happy and lucky that I have him back.

[StrawberryCream]

Hi Pcris

Thank you for updating us on how things are progressing for your boyfriend and yourself. Yes the ongoing headaches are to be expected. I am wondering if you have read back through the responses on your previous post because you may find some reassurance and info there (I know there is in my response) that what you are experiencing is to be expected. Recovery from BM takes months and longer and not just days or weeks. Your boyfriend has been life threateningly ill and although the infection has gone the inflammation and the effect of the infection is going to take quite sometime for the brain to get over. It is not unusual for that to cause him to be very irritable. Likewise I lost a big chunk of my memory from before the BM and suffered the confusion when I came out of the coma. It's called retrograde amnesia and post traumatic amnesia. I know I suggested it before but I am wondering if you did contact the Meningitis Now helpline? If you didn't then I would very much encourage you to do so. They are a great support in lots of ways - to off load all you have been through, your worries about how things are now and what you may expect over the next weeks and months. They can send relevant info that explains things for you and your boyfriend so you can look at it when you are ready and keep re reading along the way as things will change and new questions and concerns may present themselves. They can also arrange for someone from their MN community support team to come and visit you both and there are other services they offer. The helpline no is freephone 0808 80 10 388.

Taking each day at a time is the best way to face things at the moment and when things are tough try and remember this it what the BM has done to your boyfriends brain and not him choosing to be like this. Think about how far he has come since your 1st post and given time things will progress in positive ways some more.

Best wishes to you both.

[Pcris in reply to StrawberryCream]

Thank you. Yes I have been trying to call meningites now helpline, but the line is always busy. But I will keep trying. I do need some help and advice from them.

[StrawberryCream in reply to Pcris]

The helpline is open from 9 a.m - 10 p.m 365 days a year so hopefully you will get through. Or you can email them helpline.meningitisnow.org if that's easier to do.

Oops just realized I typed email address slightly wrong its [e-mail]

[MNClaireD Partner Meningitis Now in reply to Pcris]

Hi, I am sorry you were not able to get through to us, please do try again if you have not done so already. The helpline is quieter during the evening and at weekends if this helps. The other option, as mentioned previously is to drop us an email [e-mail]

Best wishes, Claire

[Pcris]

Thank you, I will.

[StrawberryCream in reply to Pcris]

Just to let you know I have corrected the email address as I type . Instead of @! It should have been [e-mail]

[Pcris in reply to StrawberryCream]

Thanks. I was just reading your story. .I can so relate to you has I have a 4 year old and this so confusing for him...

[StrawberryCream in reply to Pcris]

Yes my son was 5 and I adopted him as a single parent so there wasn't any partner to still be there for him. Also it exacerbated things for him big time because he already had his own traumas and losses from his earlier life. He was just starting to feel more secure but then as it was only about 18 months after adoption it really set him back and we still have lots of struggles and difficulties even now. Hopefully because your child has had a more stable early start the impact will not be so enormous. It's important to explain in an age appropriate way what has happened because children cope with the 'knowing' much better than the worry and confusion associated with being aware that something has happened and affected the people they love but everyone avoids talking to them about it. There imagination can go into overdrive with fears. They overhear and also pick up on unspoken things even when we think we are protecting them from it all. I have experienced my son expressing worries that he had but didn't express until a long time afterwards but he had continued to be troubled by them. I am not the 'mum' I was so he has also had to adjust to another new version of me.

Best wishes

[viola78]

Hi Pcris,

Thanks for your post. I am really pleased that your boyfriend has made a full recovery. I had headaches for 4/5 years after my meningitis. They did eventually subside and disappear. If he is in constant pain then that can cause him to be moody. I know from what my parents and my brothers said that I was moody and quite emotional for a long time after I came out of hospital. They kept testing and checking me over for several years. I found that relaxation really helped. I think he is so lucky to have someone who cares for him and is there to support him. Well done to you. Do you have support for yourself too? Do you need to come up for air and have some R and R too. Caring for someone recovering from the effects of meningitis can me very tiring and draining. Hope you have friends and family to help you.

[Pcris]

thanks for you reply.

his headaches are now a bit better but he is still moody. and you are right, sometimes it's really difficult, I didn't have meningites, but it affected me too.

our memories together are gone....

some days are good and others not so good.

I just feel happy everyday that he is still alive.

[Stace30]

Just to add reasurance pcris

To the people who have had bm or any type im sure will tell you that to us all this stuff is normal

All the stuff your saying and responses sound right nd similar to me/my experience

Youre days differ

The attitudes of my posts/days differ still

Like whats been said fun patience relaxation helps and also you need that too also if hes well enough something to start distracting him

An outlet to let anger out and definately time 🤗

[Pcris in reply to Stace30]

thank you. I guess we just need to take each day as it comes...

[Stace30]

Yep honestly there will be times where you will both feel like things are never ending and like nothings going to change, frustrated, confused, helpless etc. But its just excepting there will now be a new normal and allowing yourselves to feel however you want to in that moment. Each day 🤗