Hi everyone this is the first time i have asked for help. My life changed about six years ago. i was diagnosed with adult onset stills disease. I had to give up my career, and lost all dignity as the steroids helped me put on about 5 stone ! obviously the lack of movement helped too. i ended up in a wheelchair for 18 months, gladly i worked hard and now walk with two crutches. i have a grown up son and am 43 years old. my husband, mum and dad have been my rocks, i dont think i would still be here if it were not for them. Unfortunately depression hit me hard, and have some really bad days. my mum was my best friend and 4 weeks ago she passed away very suddenly. i feel totally lost without her. i am keeping it all in though as i feel its my job to keep my dad going. they were together for 50 years and he also is totally lost without her. just wondered if anyone could give me any advice on how to go on?
im sorry for ranting but ive read this site for sometime and see how it helps others. thanks for listening.
hope your all well and happy, take care.
vicki71
xxx
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vicki71
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at times life is very cruel , this site keeps me going as I too never ask for help but have always given help to other ,slowly iam finding that its ok to ask for the help we need and not feel bad about it, getting your head around any condition that is going to be around for ever is hard ,and to loose a loved one is harder ,its ok for you dad to see you cry ,it could help as he will know you are holding it in for him ,try to stay strong and in life we take big steps and little steps it dose not matter if we don't get thing rite ,take care and remember you are never alone.
Thank you so much junebee, its funny my mums name was june!! This is the first time i had spoken of my problems and didnt know who would respond. thank you for letting me know im not alone, I just have to continue taking one day at a time. take care.xxx
I so sorry to hear what a difficult time you have been and are still going through.
The best way to help your dad through his sadness and grief is to look after your self and I suggest contacting your GP and asking to be referred to a counselling support service so that you can express your own sadness and grief in a 'neutral' space.
When my dad died my mum found it helpful to talk about him by sharing memories or by including him in things by saying things like "dad would be horrified if he knew we just sat and ate that..." Or "he'd have loved..." so that he wasn't left out of her daily life. We'd cry over some memories and laugh at others!
The hardest thing she found was not having anyone to share things with, especially when she'd gone in to town and seen someone and chatted with them and then gone home and there was no one there to tell. She tired easily and visits were short but regular by a variety of people and it helped if someone was going to town if they dropped in and said that they were going in and did she want them to pick something up for her whilst they were there... that way she didn't feel she wasn't putting anyone out but also got her needs met.
I hope that helps and please be gentle with yourself over the coming months and remember to ask for support for your self when you need it... the little things will make a big difference in your mental, emotional and physical wellbeing.
Thank you Ali, for caring enough to reply. i will take one day at a time like i told junebee. knowing i am not alone is a real comfort. i have had to do everything as dad is not strong enough at the moment, like i sorted all the funeral and now have spent days sorting out mums finances as she didnt leave a will!! i have 6 sisters ans brothers, but im the closest to mum and dad. it doesnt help that i am on embrel, mycophenalate, lots of pain relief and my diabetes has got so bad i now inject for that every day! trying to not focus on myself has been easy but now i am suffering. i have pleurisy and a chest infection, which usually turns into pneumonia. on my fourth lot of antibiotics. and feeling very drained. thank you so much for letting me let out some of my feelings. hopefully your ok and well i hope. thanks again. vicki71 xxxx
You will go on, you will. It is surely normal to feel crushed at such a time and normal, if painful, to acknowledge how very hard it is. You are wise to reach out. In this world we live in, so much is made of money and possessions and status but you have what many would give their right arms for - a loving family. I guess when we love people we are vulnerable to the grief of losing them, that's an obvious thing to say, I know. It's wonderful that you are there for your dad, though it's going to be a tough number for a while, maybe for quite a while as you are both grieving.
I'm just rambling really - what do I know. But your post touched me and made me feel both sympathy for you and admiration for the close family ties you have and how much you care. And I also (though maybe this isn't so important) caught a glimmer of shame about putting on weight and not being able to go out to work and thought how daft it is that many of us feel like that. Really, these things are not something to be ashamed of, you have much to be proud of and much to give - that really comes across. Wishing you well, wishing you strength.
Thank you so much postle2, you have brought a smile to my face. thank you. i have even shown your reply to my husband. you summed me up so easily, i love to give,time effort money. it doesnt matter what is needed i try to help. but i know now i must look after myself too. i will continue to be strong for my dad as thats my job now. knowing there are people like you out there makes life so much easier to cope with. THANK YOU. vicki71x
How I feel for you Vicki. I lost both mum & dad when I was 23 & 33 & still now miss them hugely. It sounds trite to say but the ache does ease, it's just a different, less deep down in your tum type of ache. Your mum loves you as nobody else can ever love you & that's so hard not to have any more. The first special days will be the hardest when you gather together as a family but you'll all share your own memories, things each of you didn't know about her & you'll cry but you'll laugh too, remembering the things she said, did & couldn't do. You'll pass a stranger on the street & their scent will take your breath for a moment. I often smell my dad's pipe smoke....impossible as he blended his own. What I find odd is that my h smells it too!
I don't know if this may help you or your dad but my h's mum died in February & his dad chose his favourite picture of her & has her favourite flowers, freesia, in a small vase beside her picture. He replaces them weekly as he says the scent reminds him of her & he feels less alone.
And you're not ranting you're sharing & that's healthy. Share how you're feeling with your dad, he needs you as you need him & so cry together. I was an only child & the year my mum died was the year before I married so I was still living at home & my dad & I for a good few months after mum died used to just sit & hold hands, nothing being said but both just needing that touch.
Your h & son will be at a loss how to make things better too but please don't shut them out telling them you're fine when you're not, they know you're not & will want to be there for you so let them. I know you won't mean to but you may not realise you're doing it. Again, share, they're there for you as you've always been there for them. x
...& what a lovely way to look at it June. I would certainly like to think so. In fact I always say happy birthday to them on what was their birthday & anniversary & always say good morning/afternoon when we drive past the garden of the church where we placed their ashes. Daft maybe, but I'd like to think they know. Coincidentally, the following year on the same day that we placed my mum's ashes my h & I were married there.
I just wanted to reinforce Nomoreheels point about inadvertently shutting others out by saying your fine and not accepting small tokens of support. The most important thing you can do for others around you is to give them a sense of purpose in your struggle by accepting their offers of support. Friends and family may (or may not) be at a loss as what to do and you opening the door of giving for them by simply saying "I'd love a cuppa!" will pay dividends for you and them.
The weight thing... those that matter to you will understand and those who don't won't because of their own issues so don't throw any energy in that direction. As for getting out to work - I'd say that you ARE working, like so many others, from home! No one asks for diabetes, RA or any other such condition but we get it, take on the extra work load and do our best to stay as well as possible whilst being supportive and active members of society but unlike other 'home workers' for us there are no holidays from the 'job'... Flipping heck Vicki if I carry on this conversation in this vein I'll start feeling sorry for myself -and a whole lotta good that'll do me!!!
Time to open a jar of universal healing energy and quietly bask in it's glow for a few moments... hell I'm opening a few jars and pouring it into the ether for all us 'home workers' to draw some healing energy from.
So sorry for your loss. I had bereavement counselling when I lost my Dad and found it helpful. Is this something you and your dad would consider? It helps to to talk things through about everything. I felt very low when I was diagnosed a few months ago with Spondyloarthropathy. This forum has been a lifeline for me so please keep posting as you're not alone, take care xx
I can't really add anything different to what these lovely ladies have said already, but just know you can come on here anytime & the love & support we give each other is immense & sometimes just having that is enough much love take care Michelle xxx
Poor Vicki, what a tough time you are having. When my father died, my Mother insisted on being 'strong' for my brother and me. Her intentions were good, but it had the effect of locking us out and inhibiting our own grieving. So, if you are able to share your pain with your father, in a loving listening way, you might be doing both of you a favour. Your son too .
When I've been feeling especially low ( and I suffered clinical depression even before I got RA) there are three things which help. 1). Fresh air, the purer and less-polluted the better. Getting in touch with nature really can soothe and refresh. 2) exercise as well. That is difficult when one is so low, but however modest the goal, it helps to make one feel better about oneself. Maybe you could even involve your father in that. 3) meditation. I always found that difficult ( especially when I most needed) until I found onemomentmeditation.com. For starters, the animation cheered me up!
I hope that some of that is helpful. You have taken the first step - sharing on this forum, and thank you for doing that. You will surely have helped someone else by doing so.
Take care of yourself. I'm sure that this is what your mother would have wanted. Jo x
thank you all so much for your support and thoughts. i feel so much better having talked about my situation. i will try to let my family in on my feelings. maybe i dont have to be the strong one all the time. you have all been so kind to give your time in responding to me i really appreciate it. thanks again and ill keep in touch. love to all.xxx
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