Hi all

Hi I am slightly different in that I am not grieving for another person, but for myself. In one day I suffered a lot of pain, had a massive seizure. Which in turn badly affected my legs and caused lots of issues with my health. I am now struggling with two neuro conditions and reliant on a wheelchair. But no doctor warns you of the incredible loss you feel. I had a career that I worked hard to achieve my role, but had to give up work. I had a social life, but all the people I thought were friends have disappeared and I am now housebound. I lost my independence, just the ability to drive myself anywhere or simply go shopping on my own or walk my dog. There aren't many organisations out there that deal with this type of bereavement, and believe me I've searched. In the end I have managed to be referred to a trauma therapist. So my situation is very different, but I have known loss and can totally empathise with all of you.

17 Replies

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  • can understand this....especially if you really can't do anything at all. I lost a lot of my abilities following a neck injury at 27. Also had a dislocated hip since birth...undiagnosed. I tried to ignore both of them but it got harder as I got older.

    Now I'm older still more of my friends are not totally fit so we have more in common again, but they seem to make such a fuss about little things. You should grieve for the elements of your life you have lost. You will be /are a different person but maybe you can find new satisfactions....you will certainly be much wiser...good luckx

  • Hi thank you for your reply, you are right it is difficult to cope with ill health. It is good to hear that you have your friends around you. When I did have people around me they use to moan to me about having a cold, then look at me and say oh I shouldn't be moaning to you.

    I'm getting there it is hard as I have suffered some brain injuries from all the seizures I have had over seven hard years. Its a good job I'm stubborn and determined. I haven't given in, even though when I look in the mirror I don't recognise myself. Thank you again for your reply

    Angie

  • funnily enough I have just found a letter from a GP I had when living in Devon referring back to a psychiatrist/psychotherapist I had seen previously....he had concluded my problems were physical not psychiatric! Maybe I'll see if he's still alive....perhaps we need a specific charity, tho' I would much prefer it was state funded..

  • Hi, I can understand your frustration. My husband has just died of a rare neurological disease, PSP. Not once was he ever offered any counselling, did the consultant tell him what was wrong or what to expect. He was sent home and told to Google the illness. Our medical service just doesn't seem to care about anything they can't cure with a quick pill.

    Of course you are in mourning. That's totally normal. Unfortunately, I don't how to advise you where to go for help. I fought everyone tooth and nail, to try and get help for Steve, but never succeeded.

    I wish you luck in trying to get help and sending you a big hug to say I hear you, I understand and feel your loss.

    Lots of love

    Heady

  • Aww thank you Heady for your lovely reply. I totally agree with you I have been all around the houses, seeing different arrogant consultants that seem incapable of listening or empathising with their patients. I have been taken into A & E so many times and just left in a cubicle for hours. You are right if someone doesn't fit in a neat box then they want to get rid of you.

    I am so sorry to hear of the loss of your husband, it shouldn't have been that you had to go into battle ti get him help, that is oit of order.

    I am sending you big hugs back :-) take care

    Angie x

  • I am so very sorry to hear that you have lost so much in your life and now housebound, angelfish28.

    A trauma like this is linked unfortunately to a lot of grief. Very often trauma is followed by grief of a very important part of our lives which we have lost.

    I agree about not enough places/organizations that can help deal with this type of grief. I didn't know myself that I was experiencing grief for my old self after trauma.

  • Hi Nathalie thank you for your reply, no one prepares you they should sit you down and explain that because of this illness/injury you will feel a loss. But no body does, I felt as if someone had set my feet in concrete. Everyone else was getting on with their lives and I have been stuck. Did you get any help?

    Angie

  • Hi Angie,

    I agree about how important that is and I wish there was more awareness about this type of loss/grief.

    I am getting help from a good trauma therapist.

    Nathalie

  • I'm glad to hear that your seeing a trauma therapist, I am seeing one as well. It does make a difference.

  • Oh angelfish28! I'm so sorry! Yes you have experienced a tremendous loss in your quality of life!

    Have they determined seizure cause or trigger? The closest experience I've had to needing a wheelchair is when my hepatitis is/was active. I've had it since age 2 off & on my whole life. The effort to move is exhausting & my limbs are so heavy making movement impossible at times. I'm not sure how I made it to the bathroom most of the time. Even my eyelids were wearing 10 lb weights. I suspect I've probably slept through a quarter of my life. Until now I've never put the significance of its loss of quality in any perspective.

    I hope they find a fixable cause for you.

    Do find a trauma therapist sooner than later! They can help with coping skills & tools needed to get through the roughest parts.

    Try not to judge all of your friends too harshly. Not all know how to help & watch you go through this. Its scary to watch those we care about suffer such things. There may be only a couple who will be strong enough to handle your ride. Those who have empathy for you will come back around & the ones who don't need prayers. I'd bet some even feel guilty for not being a better friend. Who knows but their weakness is showing!

    Stay strong best you can!

  • Hi Rayvenjade thank you for your reply, your condition sounds very difficult to live with, it must have been hard to live with a chronic condition for most of your life. I have two neuro conditions, one of which can cause seizures, when I have a seizure it completely wipes out my speech, it is managed with medication. A lot of my seizures have been caused by my partner who has a brain I jury, he has mood swings and when he losses his temper it causes a seizure. I had two years of enduring an antisocial neighbour as well and a lot of battles. My condition is very difficult to manage and has been deteriorating for seven years.

    The people who were friends I have never seen or heard from for six years. I think looking back it was me making all the effort, and now I can't be there doing things for them they've moved on. My oldest friend said to me when I said everyone had disappeared that I should think how difficult it was for them, I had to reply how do you think I feel, at least I know now.

    I have started to see a trauma therapist and so far so good, people never think that having a condition/disability or injury that you will also feel grief,

  • Hi Angelfish,

    I too am mourning my previously active life. I have a progressive condition which is robbing me of my sunset years. Like you, housebound and wheelchair dependent, I used to be very much an outdoors person, rock climbing, horseriding, dancing, hiking, gardening, martial arts, etc.

    I am angry at my body letting me down like this, angry that my son has put his life on hold to take care of me, worried about his future.

    The Frustrations of this non-life are immense.

  • Hi Midori I totally understand how you feel its overwhelming the anger. I said to my trauma therapist that I felt as if I had had a big chunk of my life ripped away from me and that I was now like an elderly lady. People don't understand that you feel like your existing not living.

    Are you seeing a trauma therapist?

  • No. I've never heard of a Trauma Therapist in the UK.

  • Hello there @angelfish28

    A very warm welcome to you.

    I can relate only too well to your post. I too, lost my career, friends and future after suddenly being taken ill, little did I know just what the effect would be. The sense of loss and bereavement is so strong that it pains me to write this even now and I don't think I have ever come to terms with it fully. Like you, the loss of independence is unbelievably hard to bare and the fear too, that I was dependent frightened me.

    So, we are all welcome here and all have different losses, my hope is that we will all support each other in our time of need.

    Chloe

  • Hi Chloe thank you for so much for your reply. I totally understand how difficult it is to speak of this type of grief. I have never had any doctor say by the way you feel such incredible loss, and we can get you help. I don't about your situation, but it was a struggle just to get anyone to help me. Because my symptoms didn't fit in a neat box they couldn't wait to get rid of me. It is so hard to grieve for yourself, when its another person you can address it. Its the anger that in one day my career, my social life, my indepence was ripped away from me.

    But I thought where do I start, I told a therapist that I felt I had been set in concrete just watching everyone else getting on with life. They could see the hurt and the anger and I have seen a trauma therapist for a few sessions.

    If you struggle at any time or just want a chat, I'm always around.

    Angie x

  • HI Angie,

    I didn't have anyone speak to me either about how different my life was going to be. I didn't even have a therapist to discuss things with and it's tough, it's very tough but after many years, I have channelled my energies into study and this has opened up so many avenues, I would definitely recommend it. Thank you for your kind offer.

    Chloe

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