Introducing myself

Davey sorry I didn't reply to you sooner. If anyone would take me daily medication it would kill them . I once read a murder mystery where the person was killed with one of my tablets. While some help with my health problems the pain is at a level I tolerate . Have been in pain my whole life and think my body tolerates more pain that it did 10 years ago . Because I am always in constant pain if I was suddenly pain free I would know I was dieing . Pain is just part of my disability and it's shaped me into the person I am . Because of my extended family and my husband I am a strong independent woman . The older I get the more militant I get for disability rights because I was denied them for 35 years. I try and help people with my experiences and not to make the mistakes I made and encouraged them to fight and tell them who will help them .

All my joints are damaged through falling all my life and I have a host of other things happening to me . I didn't get my diagnosis of what my disability is until I was 63 in 2022 and only because I have a neurologist who cares put me on tablets in 2020 that stopped my limbs jerks and 4 seizures after having them for 32 years with 2 weeks they stopped. Changed my life. And he had my whole genome genetically tested so know what I was born with .
Like having a cardiologist who found out I was born with hole in the side of my heart in 2020 and confirmed position in 2021 after MRI on my heart . I have rare hereditary neurological condition, paroxysmal atrial fibrillation and Osteopenia in my left hip. Took a move of over 100 miles to the north west to get GP practice that sent me to see the consultants . My old practice knew I had heart problems but didn't care had a neurologist who didn't help me . Healthcare is a postcode lottery.

My dad always said no such word as can't if I said can not he gave me a look. Because of my parents and all my family I grew up not knowing I was disabled as no one treated me as different even at infant and junior because all us kids live on the same estate they where used to me falling ,being in pain, having no co ordination. I was just me . Wasn't till high school found out I was different and bullied everyday for 5 years. While it was horrible at the time and I was a quite child also clever it gave them more ammunition. But I still went to school everyday I couldn't let them win . This was 70's when done of the teachers where bullies but not to me . My parents always said sticks and stones may break my bones but words will never hurt me . Which as we all know is a lot xxxx . Words do hurt more that a push . I was never hit at school but one girl did stick a can't think of the name of it you know the thing that made circles it had a pointed end . But I didn't cry but glared at her and her stutter came back . With our English teacher they had worked to control it after that she didn't lose her stutter. So she got bullied for that but not by me but I had no sympathy for her as she was getting a dose of what I lived with. May sound cruel but if you know every day you are going to be called names and treated like xxxx then you have no sympathy if one of your bullies gets a dose of her own medicine.

Davey the blue orb was probably your partner our minds show us things to help us . She will always be with you in your heart and mind . When my best friends husband's died nearly 3 years ago I said have you found any feathers in your house she said yes but had nothing made with feathers . They are Christians and have a strong faith so said it was P trying out his wings . And it made her happy everytime she found a feather in her house she put it in a jar . I am an atheist have been since I was 14. But telling her that made her happy . Grief is painful both physically and mentally and if you have health problems as well it just makes things worse.

Davey I think your partner would be cross at you if you give up fighting to live everyday . She loved you and your where eachothers other half. I know you feel half of you is missing and in my experience heading to 22 years it never gets easier . But you found eachother and that is precious and so lucky to have the one person in the world that completed you and you her. I know who didn't spend everyday together but that didn't matter the love and total trust in other eachother is what counts . You both knew the real her and she knew the real you. I have swore at my husband,ranted at him for dieing and leaving me but I see him with his stupid grin on his face as if to say feel better now and I do . He loved Christmas and since I moved her 6 years ago after our grandsons have decorated my tree I see him standing by it .

I know it's a struggle for you everyday plus moving so quickly because you needed a bungalow,both of you being in hospital,her dieing and the pain you are in with your spine it hard . But you must live I know how hard that is but you have to live for her as well as yourself. You will find ways to cope with your grief but it will take years . And you will find ways to do what you want to do even when your body fights against you.

Have you been in touch with occupational health and gotten help from them . Unfortunately can't remember if I already said that . And make sure you get all the benefits you are entitled to the CA and the charity association with condition will help as well.

I have the National Disability Card it's £20 for 2 years but comes with host of benefits like money of shopping . Google it and see if you could use it . I wear mine on a lanyard everytime I go out.

Davey I can't say grieve will get easier and know you are in pain with your spine but your body will eventually learn to tolerate it . Sounds weird I know but our bodies are wonderful things and we adapt . You probably don't believe me but it's early days for you but one day you will find you can cope it can take months or years but never give in fighting . I hope you see other signs that you think your partner sent . And they make you feel happy .

As usual I ramble on but that's me . Just hope one thing I have says helps . 🌹

I find feathers in the garden Whiff. Do they count do you suppose?

Sorry, to hear about your loss. Please try to get out walking or going for a bus or car ride each day and stopping off for a coffee and cake if you can. Sit on a bench and watch the world go by. Whilst, it will not replace your partner, it will keep you connected to this worlds. Also, set a menu for your day and try to stick to it. Perhaps try to explore some of the areas/subjects/films/music that were dear to your partner and enjoy what she enjoyed. Families can be cruel but you still have a life to live to try to fill it with things that make it go round.

Hey Whiff,
It’s really nice to hear from you. If you don't believe, what are your thoughts on reuniting with your partner?
I really hope you unite with your partner and find happiness forever.

I feel horrible about my partner's passing as I was her partner and should have protected her and I couldn't so as her champion I failed.
Things are moving now as I have the nurse calling once a month and a social worker is being looked for me as I need help with my mobility scooter as the motor is going, I don't need it all the time it's when I'm sore.

I've started building flat pack furniture as I needed storage space and all is going well.

Take care and blessings.

Grammaretto if you have a faith I would say feathers in the garden do count. I know it helped my friend to think of her husband trying out his wings . You use what ever you need to cope with your grief . There are no right or wrong ways grief is different for everyone. For me it's talking to my husband everyday and having a rant at him when I need to . But that's who we where and I still am the same . We both where stubborn and had tempers but we never argued about important things. And we never when to sleep without telling eachother I love you . Still tell him every night when I get into bed .

Davey we believed and I still believe what we do in live is what counts . I have had so called Christians telling me I will burn in the fires of hell because I am an atheist. If that's Christianity you can keep it. I informed them as I don't believe in god or heaven I don't believe in a devil or hell. But I will burn when I am cremated. I really don't understand why people are so bothered I am an atheist. I don't say they are wrong to have a faith but they think they have the right to say vile things to me because I have none.

I see me husband in my heart and mind . I last saw him in the flesh when he died . His ashes are in my wardrobe. Who he was lives on in our children's and grandsons DNA. And that makes me happy . We will never be together again . We had 29 years as a couple and married 22. He was the other half of me and me his . I lost half of me when he died but because of him and the love I still have for him and I promise him lot of things he was a wiseman and knew what I needed to live without. But only could do the main one the last 6 years and that's to live the best life I can. Think I have already said I use the rage and anger of him dieing to get me through everyday and to live my life to the full . Before I existed I don't anymore.

I help people if I can with my experiences I have had to face in my life . One life is good enough for me and the time we had is precious. That will end when I die .

Davey never think you failed your partner you where eachothers other half and you found eachother. Some people live their whole lives and never have that . That kind of love and total commitment to one person . Took my brother until his third marriage to find that . He paid me a great compliment within 2 weeks of meeting his wife for the last 9 years . They meet a couple of years before . He said he now understood what we had as he never had that before. He understood how hard it was when my husband died and since . He didn't really understand the depth of my grieve but he did now as he couldn't imagine every being without her and she is his only true love the other half of himself and she feels the same they make a whole . I did tell him finally he found someone who I loved . She is more than a sister in law to me .

Davey if your partner heard you say you failed her what would she say ? Bet she would tell you ,you didn't and how much she loved you and how much joy you brought into her life . Do not think you failed you didn't you gave her your total love ,caring , support , understanding and everything that you are was hers and hers alone .

I was born disabled I was prepared to die first but it was my fit healthy husband who got cancer and died first . But not once did I ever think I failed him . I watched him dieing a bit everyday for 3 years but I did everything I could to give him the life he wanted . No one knew he was dieing until he became terminal. He didn't want anyone to know apart from me and the children. As he didn't in his words wanted to be treated like a dead man walking .

There are only 2 certainties in life we are born we die . The rest is up to us. Hold your head up high you gave your partner all your love and half of yourself and she gave you the same . Be proud of that ,be proud of the love and life you had together . This is going to sound harsh but you dishonour your love for eachother if you think you failed her. She sounds a very strong woman and would hate you to think you feel you failed her .

I am glad you have a nurse keeping an eye on you and hope you get a new mobility scooter soon. Are you in touch with the occupational therapy department as they may have things to help you in your home and out. Plus the falls department at your council can help as well.

Flat pack furniture is like a jig saw puzzle once you sort all the bits out and read the instructions it should go together correctly. Take your time putting it together and don't hurt yourself.

Sorry GoodafternoonTea very good suggestions . I joined various groups that interested me when I moved here . And this week went to 2 other classes one for 8 weeks the other 12 weeks run by my council. And they where fun. Going to Harrogate for 5 days on Monday for a hol. I stay in Premier Inn as they have accessible rooms for walking and wheelchair disabled. Who ever designed the rooms and shower room was either disabled or listened to disabled people as they are perfect for my needs . Travel lodge who are the same company have them as well but shower room smaller. But every Primier inn and Travel lodge have accessible rooms. Other chain hotels don't. I travel by train with travel assistance which is excellent. Can't go abroad because of being crammed in on a plane plus the steps to get in and the thought of going on a coach or cruise is my idea of hell.

We each grieve in our own ways. For those who say get out around people...when I did that after my husband died, I wanted to flip them off and scream at them. Some of them preached at me. I have some choice words for them that I can't say here. For those who say go to grief counseling or something similar, that didn't work either. I work on being closer to him in the here and now. In fact today would be our 35th anniversary (December 22). He died a month after our 31st anniversary. I miss him as much as I ever did.

I'm working on my inner self. That seems to help me best.