Urge to Post

Hi all, I feel the need to post.

Been having an unsettled time of late. Nothing changes much, I suppose I'm wrong in expecting it to.

I need daily paracetamol to function, today I took co-codamol because I was having to step up the coping. But it was fine, went well and I came home feeling good.

I'd just like to be able to predict how I'm going to feel.

It doesn't matter whether I do or do not have a good night's sleep. I still think air pressure plays a big part, but that's not an easy one to prove or disprove.

When I first get up in the morning I still do that zombie walk I wrote of years ago, but I suppose I do it less now than I used to.

I've written lately that acupuncture has helped me, as has Tai Chi, and that still holds good. If truth was known and I was honest, I suppose I'm bitter that I'm having to deal with this.

It's cast such a shadow over our lives, I know we all have to deal with this, I'm just tired of the daily fight against it. The positivity is just in hiding at present, it will surface again soon, I won't let it get the better of me.

I just felt a little honesty wouldn't go amiss, I'm only human after all!!

And, I'll even own up to a little jealousy towards all those of you who have gone back to work or resumed driving or can even indulge in those sports you used to, run, ride bikes etc., etc.

Don't get me wrong, I'm glad you can I do fill my days with lots of things, just a bit different from what I had hoped would be.

Sorry for the self indulgence of sharing that with you, don't know where it came from really, been a good day overall, just wish they were all like this.

Best wishes love Janet xxx

28 Replies

  • Sad to say Janet but I'm with you with what you say. You've expressed it for me x

  • Thanks Caroline,

    It's not easy saying just what you feel sometimes, can leave you quite vulnerable in a way. But I'm sure most of us can feel like that sometimes, it doesn't make any of us bad people.

    And sometimes, just sometimes, I get sick of putting a brave face on!!

    Take care xxxx

  • Hi Janet,

    Is it the weather because I feel like you......Most days are good post injury but at times like you've said above it just takes hold.

    My sister has gone on holiday and left her car with us whilst she is away. It's parked at the front of the house (hubby's car parked on drive when he's home from work) and each day when I look out the window it reminds of what I can't do. Today for example it's raining and miserable and I just wanted the old me back. I wanted to get in the car and drive to my friends, just like last Friday when I wanted to nip into town. None of it is possible, but just sometimes Janet like you I too wish I didn't have to fight.

    Yesterday though! I was overcome with excitement because I finally saw Jenny Wren go into her little house box. Ive heard her singing and husband has seen her, but I hadn't until yesterday. Janet, I was like my five year old grandson shouting I've seen her.....hubby thought I'd lost the plot....I probably had, but it made my day

    Janet take heart we all have those above days, times etc..... You are a positive member of this site and theres nothing wrong with posting and saying how it is. Janet you're only human and sometimes just sometimes we are allowed to feel a little down beat

    But hey ho! Onwards and upwards take care and happy tomorrow's 😃

  • Thanks Cindy, I really appreciate the support. I've even been known to say I wouldn't change anything. That illness and what I now live with has taught me so much, I was always able to empathise with folk but I can to the nth degree now.

    And I do know I've been lucky to recover the way I have, it could have been so much worse.

    Later in the year I've booked with my husband to attend a "Medecine and Me" series of lectures for a day on Living with Ecephalitis at the Royal a Society of Medecine in London. That appeals to the old me greatly, should be informative.

    I understand that excitement you had, and that longing to drive, ah well, too many cars on the road anyway!

    Love Janet x

  • Hi Janet and Caroline, same here.

    I'm so glad you shared. It's not self indulgent at all.

    Take care Kx

  • Thanks Aqua xxx

  • Hi Janet,

    Its good to be honest its the only way and especially to yourself. Nothing like a good share up on here with fellow BI sufferers. Have a good evening. N

  • Thanks MX, it's good for the soul isn't it?

  • Count me in Janet. Perhaps it's the sudden onset of miserable wet weather after the heat-wave. Hope we're all headed for better days pretty soon ! Sending enough hugs to go round in the meantime. xxx

  • Thanks Eileen, I know it gets us all down just had to voice it is all, I'm sure that thundery weather is partly to blame. And I do know that longing around the house doesn't help me at all, but where to go and what to do? Maybe swimming today, not much fun if I get soaked on the way.

    Love Janet x

  • Hi Janet, you just summed up how I felt yesterday, I couldn't manage anything at all and had to go to bed early as my head was banging and I felt miserable. I'm feeling reasonably okay today so here's hoping it lasts!

    I totally understand about being able to predict how you will feel and yes it does get you down being fine one minute and not the next, I guess it is just part of how we are now but it takes a lot of getting used to...if you ever really do!

    Anyway I hope you're feeling loads better today and may we all soldier on through the bad days together by being honest like this. xx

  • Hi Peaches, as I've just said to Cat I'm sure the thundery weather hasn't helped. Part of my problem has been the fact that my fine motor skills have been affected so it's much harder for me to engage in the hobbies I used to love, I still do them but it's far more challenging now, so not as enjoyable. I've picked up jewellery making too now, and when you constantly drop components or find it difficult to manoeuvre them the air can be blue, but I do see the funny side at times, why do it if it's so difficult!!! Just me I suppose.

    Thanks again Janet x

  • Hi Janet,

    I'm pretty certain you know I'm in that particular camp along with you. It's hard, it really is. And I suppose it is most of the reason why I like to get out and walk so much. Takes me away from it all, for however long we are out, just strolling. Clears my head, takes away the stress, releases the pressure valve.

    If I'm honest, writing all of my nonsense helps that process too, as do the video diaries I'm in the process of trying to get 'out there'. If I'm not the person I once was, I'm sure as hell going to try and get the masses to understand my/our predicament. You are far from alone and I do hope you know that

    A x

  • Hi Andy, just clearing my thoughts I suppose. I like to get out too but I find it difficult to motivate myself on my own and my husband won't be retiring for a couple of years, if he can afford it then as he'll only be 62 and 4 years shy of his state pension.

    So, I just have to get on with it don't I. I'm just not the most patient of people. Take today, I should go swimming the session is 11.30 - 1.30 but I'd rather get up and go at 10. By having to wait I lose all impetus, plus it's wet again today and it's not much fun if you get wet on the way there and on the way back too. This is where I miss my car. Public transport is only good in fine weather! I sound really whingey now so I'll stop. I'll be ok just had to get it out there. I think I may need counselling, never had any to date but maybe now is the time.

    Hope you have a good day. Thanks for being there Janet x

  • Morning Janet,

    I do hope you manage/ feel up to swimming🏊 I use to be a decent swimmer but another pleasure I can't do 😁

    Anyway! Counselling is good if you get the right counsellor. I saw one at my local doctors, but she was not the right one for me. I was referred to a Neuro physiologist who I eventually saw for nearly two years (once a week). Because of promotion etc... over the two years I saw 3 different psychologists.

    Janet I highly recommend you see a psychologist because it made a massive difference to me and hubby. Hubby sat in on different occasions (suggested by the psychologist) which helped him to understand how my brain works and the best options/strategies to deal with the now / new me.

    Hope the sunshines a again soon and gives us all the warm rays we need to function better. In the mean time counselling sounds a good/positive option to help you Janet.

    Take care 👌😃

  • Oh Janet,I'm so sorry you feel like this. You are in very early days and I remember all to well what that's like. I'm nearly 6 years on and get help from a clinical phycologist at hospital weekly. I refused it earlier in my recovery cause I felt like you , why why why. Iv been having it for months. I do now drive and live alone back in Newcastle , talk and walk now. NEVER EVER give up. You need to try stop taking the painkillers. They will be making you feel worse. The pain steps aside eventually. You learn its there and it does become unimportant to you. Make sure you come in here more and moan about yourself, that's the whole point of this. I really hope we can help you x

  • Thanks Candy, I was told that the pressure I feel in my head was a form of migraine and the acupuncture has helped a lot with that. If I don't take any painkillers and the pressure is there I just can't function. My sight dims and I have trouble holding my head up. Some days are much worse than others, today doesn't feel too bad and yesterday was a good day.

    Thank you for the support xx


  • Have you tried an intense massage, you know the sort that hurts big time. They can really help. If the person knows what they doing the relief can last for a few days to a few weeks. The first one will be more painful but the headaches should ease. They really do help honest. I used to have them in early days and would still be having them but they not there now. They were just in a hairdressers back room but they had all the certificates that say they can inflict pain lol xx

  • I have reflexology once a month not a deep massage but that helps such a lot. I said she joined all the dots up now the acupuncture is fine tuning. Trouble is the cost, I'm having to drop the acupuncture to once a fortnight and then once a month in the not too distant future. Just think I have to admit to needing some guidance from a counsellor now, I can't do it all on my own, much as I'd like to think I can. I know this is selfish but I just want to get on with the rest of my life now but all the family things keep butting in! So bad of me but you know I was promised the earth if I would just recover, I've done that and am still striving, I just have so much trouble dealing with everything else. Nothing has changed really, it did for a while but now I'm getting stronger, Janet will deal with it all!

    This is so not like me, I hate it.

    I'm not a "poor me" kind of person but I feel like it at present, so bad. I'm so sorry you don't need me it's just good to write it down. I have a journal I usually do this in but no-one reads it so it's not shared and thereby I feel so lonely at times.

    I promise to get this sorted, I know what needs doing so I will do it.

    Example for you I've just got a text from my husband saying sorry I didn't clear the kitchen, we have a guy coming this afternoon to quote to replace the sealed unit in the window, so guess who has to do it? Well maybe I won't I'll just play the brain injury card, I'm sure the guy has seen it all before.😀

    Thanks for reading


  • Men eh useless. If it's a man coming to do the quote he won't of noticed.

    As my phycologist explained to me your mind has been concentrating on your body, getting it better. Now it's your minds turn and that's what hard. Only go to a phycologist though as counselling I think is pants. Get the doctor to refure you. Iv hit a turning point this week and it's brill but that's after months of help. Mind that's going through everything piece by piece. It is really worth it and it's the best thing Iv done. Iv seen a few of them mental people but Iv found the phycologist best by far. Never mind apologising for writing it down on here. So you write in a journal which is fab but that's a very lonely way of doing it. As for you saying you not a " me " person no one would ever think that on here. This site was made for " me " moments. So never think bad of yourself for that. Keep coming on here and let us all help. Don't suffer alone. We have all been through it and we have all had " me " moments. I really do hope you feel bit better in yourself very soon, give yourself time x

  • Thanks again Cindy, after my daily chat with my sister I've decided I need to see my GP again, I dropped the anti depressants last October, been on them since being in hospital, but I recognise I need to seek out that help again, I know all the things that I should be doing and a lot of the time I can get on with it but a little help along the way would be appreciated.

    I've been on and off anti'ds for years well before the illness and it just may be that the brain is no longer producing enough serotonin now at all, who knows. I will get it sorted, they've promised me at least a telephone consultation tomottow if there isn't an appointment available.

    Still not sure about the swimming!!

    Janet x

  • Hi Janet,

    I'm so sorry you're having a time of it. Your post moved me to tears. I also try to 'get on with it' . Keep a positive face on, all of that, but I've been up in the air this week as well. Certainly felt troubled by the low pressure and I don't care if people think it's a myth or not, it definitely affects me too.

    Please don't feel bad about sharing how you feel.......it helps others to realise they're not on their own.

    It's all completely wearing.....and as you say....you just get to the point where you've had enough sometimes.

    I also can't help looking at things I can't do now (Driving/swimming etc.), and worry about my complete lack of motivation to do the things I used to enjoy. I'm relieved to read your post - it's real and it's honest and it sums up how a lot of people feel. I hope you're feeling a bit better today, and that you get a bit of a break from it all, especially family stuff.....that's not easy. I've sent you a private message as well. Sending you a hug :) xx

  • Thanks Elenor, replied to your pm. Thank you for sharing, the family stuff is just the icing on the cake isn't it?

    Love Janet x

  • Hi Janet,

    How are you getting on?

  • Hi MX, I'm doing OK. As usual I've bottled it all up with " I'm fine" face on, but eventually it all over spilled. I'm so sorry, you all had to deal with it but it's so comforting to know you are here to help. Thank you for listening I'm going to see GP today and hopefully get referred to a counsellor I know that will take a while to organise, but we'll get the wheels in motion.

    Love Janet xx

  • Sounds like a plan ! I like plans - without them I think we can all feel a bit lost. I have many current plans and have readjusted some goalposts recently too ( much easier than striving for the unattainable ! ) Take care, Janet,

    Angela x

  • Thanks Angela, spoken to the GP this morning and going down the counselling route, I've spelt referred myself which is what is done now in the Pennine Care area, just have to wait for them to get back to me now. Feel better for just doing something.

    Love Janet x

  • Good to get it out on here though. Good luck with your GP

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