I'm feelimg selfish

New diagnosis and before diagnosis
1

Just managed to see hubby off to his archery since my symptoms have got worse he has often called off going “it might rain” " it rained a lot last night the course will be slippy" it seemed that he was looking for an excuse. A year ago our 30 year old daughter had to move back home and she went to archery too but not so much lately due to a shoulder injury. But I enjoy my Saturday mornings on my own it’s my time for not having to be upbeat or putting a face on. If I want to have a cry I can and not feel guilty or have to see Rob get upset. If I want to lie down I can without feeling I should be doing something else. If I want to try to do something I don’t feel as though Rob is watching in case I fail don’t get me wrong I love him to bits but he has become very protective and I suppose that is his way of coping with me being in Limbo. He has watched me getting worse and not be able to do things I could last year and he is unable to help. As for me I am tired of trying to keep going and pretending that my life is normal and that I am okay with how things are because I am not. I am having counselling but I think other people need it more than me for example there is an old man who lives locally who when ever he sees me walking with my 2 crutches stands and STARES and STARES and I am so tempted to either ask what his problems is or tell him to go forth and multiply.

This mornings plan was bake 2 cakes for a community centre fund raiser ( I am on committee have tried to resign because feel I am useless but Chairwoman refused she thinks it will do me good to stay ) First cake managed to cock-up recipe I have made for years and second was meant to be tray bake but one of the cats has gone to sleep in the tin I have just lined ready so I will have to do that again. Going to put my eye op to the test have to turn up some trousers haven’t been able to sew for 8 months so here’s hoping I can thread the needle took me nearly an hour last time I tried what with my crap sight and poor co-ordination I provided entertainment for my family but I managed it in the end then sewed the material to my finger as I can’t feel them so here goes I got a packet of elastaplasts standing by.

Sorry for the rant it’s and and how I am feeling today I’ll go and get a cup of tea and go and sit in the sunsine and pull my self together be fine later Sue

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Sue I know how you feel, it’s hard when your family are around to let of your frustrations as fear of them trying to help even more.

your not being selfish, sometimes others helping too much can cause even more frustration, it’s nice to be supported but sometimes that time along allows you to get everything out without others smothering you,

chin up my love, limboland is a horrible place x

my advice to you is just say how you feel to your family, explain you need time alone, but this don’t mean you don’t appreciate their support, sometimes family members don’t know what they should be doing or feeling either, they may be feeling the same frustrations as you.

When a close family has one person who is suffering its hard for them to let go, they love you, I think they just need to be e planned how you are feeling, as they may feel they need to support you all the time, x

also sue, maybe a chat with them might help them understand their frustrations too, a good family honest meeting maybe what’s needed, and if you all end up in tears crying so be it,

sending you a massive hug,

hope this helps.

be strong and remember there is good days and there is bad days, enjoy the good, fight the bad,

kind regards

heidi x

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Thanks Heidi I felt so guilty at the weekend I felt as if I was pushing them out of the door that awful feeling that you can’t wait for some peace some time to not have to pretend you are happy with things. I have tired to talk to my daughter but she is finding how I am hard to deal with and she gets angry at the thought that I may have something like MS ( she isn’t a child 31 tomorrow ) but as a family we hve been through a great deal in the last 15 years or so.

Gave up on the coffee walnut cake when it resembled a biscuit the hens enjoyed recycling it ! the tray bake minus the cat worked out but the fundraising was poorly attended.

Had a good day yesterday went to Durham to see the Magna Carta as it was hubby’s 60th birthday I am absolutely shattered today there was nowhere to sit

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I think no matter how old your children maybe the thought of their parent having something like Ms and watching them slowly decline is something that is hard to accept, it a realisation that ‘mum isn’t super mum’ all the time,

my son got angry and used to say horrible thing like " get up and do something" as my legs don’t allow me to do things I have to limit my activity so I have to prioritise what I need to do, he has had a lot to deal with in his 15 years of life, three deaths of very close people within a 5 year gap, and a mum who was always hectic now doing minimal and popping pills for the pain, a few amazing people spoke to me and one in particular through a private message on here and explained things to me and it really helped.

could you possibly explain that your daughter that your the same mum and your still here for her, sometimes it the fear of the unknown that scares people x

the anger I guarantee is because she is worried what future effects this is going to have on you, x

Another way is say that weekends or Saturdays is your day to do whatever you feel, so if your going to be in the house just let me do my own thing.

by the way walnut and coffee biscuits sounds amazing, lucky hens x x

you should of seen my attempt of carrot cake a month or so ago, I wouldn’t even give it to my dog lol x but it was something to laugh at.

sue I still strongly think you need to get everyone’s thought out in the open, not nessercary right away, and maybe not in a formal setting but I do feel it will help, gives you chance to explain your thoughts of feeling selfish, which isn’t the case in my eyes, it’s just you wanting to stop having the face on… Sometimes though sue it is good to let your family see you without the front up even though you do sound like a very proud woman who is strong and it maybe hard, but it won’t make you any less strong, but your family will understand you more, x x x

your sound a lovely woman, and I truly wish you all the best

keep baking, weather it’s cakes or biscuits, you look back and laugh at failing and feel good with accomplishments,

always here if you need to let of steam

heidi x x

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Thanks Heidi your words have helped me a great deal and I am very proud of my daughter she has had a great deal to overcome in her life she was born with sight only in one eye due to birth injury but we wanted her treated as a child with a sight problem not one with a bit of sight so she has gone to normal schools until she was bullied. At 8 she wanted to go to boarding school and enjoyed it to the full even doing rifle shooting but at 13 she had to change school and was bullied and abused by another pupil so much so the police were concerned about the behaviour of that pupil. We went through several difficult years Hilly ran away from home and it was the support of friends that got me through. She eventually came home and put herself through an access course went to university got a degree in archaeology and is now doing a masters. She moved home a year ago following a traumatic relationship that left her with debts and emotional damage and it has been hard supporting her knowing all I would have done in the past was go and sort the man out but now I can’t though I think he is terrified I might.

Hilly worked for a home care company and was very close to several people with MS and it is this that I think is the problem with her coming to terms with how I am but she is starting to accept that I can’t do our old mother daughter days and that I have limitations. If I do get a diagnosis it may be easier for her to come to terms with she ahs been quiet good at dealing with things in the past when there hasn’t been the element of not knowing.

I am baking again for the local chapel’s coffee morning but I haven’t done coffee walnut biscuits todays attempt is soft gingerbread and victoria sponge ( I need to put a second one in the first sunk ) I get baking days like this I entered the local show last year and it took 3 goes to get a chocolate cake that worked but I did win the class and had some very happy hens with a sugar rush. Plan to enter again this year Hilly and I had great fun last year putting the old vanguard’s noses out of joint some of the old ladies in the village were most put out at not winning they weren’t used competition and this time we have our sights set on more classes. Have a lovely day and keep cool Sue

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Hi sue, thank you for your lovely reply,

your daughter is a strong young lady, (wonder where she gets that from?) I don’t know you but it does sound as though you two have been strong in different circumstances, being in limbo is hard for the whole family, and I quite agree with you once a diagnosis is made then I’m sure not just you both the whole family can fight it head on.

anf also agreeing with you the fact she has worked with people with Ms so knows the damage it can do, which isn’t a something even we know, she has experience and hindsight of it. She sounds like an incredible person sue, everyone as she will knows can be effected in different ways, and the thought of her strong and quite frankly don’t mess with my mum, going through this is scary.

shes a credit to you Hun and I hope you and you family gets answers soon, and good luck on whooping everyone in these competitions,

please don’t over feed those hens.lol

sending kinds and sincere love your way

heidi x x

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Hi Heidi thanks we aim to take on tha old guard in past years it was mostly the same group of people so we shook things up a bit and have got a couple of the younger women in the village to have a go too,some of the old women took it for granted that they would win but if we don’t encourage the younger ones there will be no future for the show and it was great fun seeing the angry looks we kept getting from those we had deposed. We have an allotment and grow mostly fruit so I’ve a list of about 6 people who have asked for fruit to do the jam classes so we intend to take that one on too.

I just gave my friends little girl what she said was the best news she had had all year (she is 7 going on 70 ) hopefully she will be able to start helping pick strawberries next week she doesn’t eat them but loves to pick them for other people she makes me laugh so much.

Thank you again for your kind words your are right life in limbo can be both scary and lonely, it is easy to be left out of things because other people decide for you what they think you can do or should do so they don’t include you but i am getting to the point of regaining the strength to stick up for myself a bit more.

I promise I won’t overfeed the girls as the hens are called they lay plenty of eggs most of the year and them living at the bottom of the garden encourages me to pull a couple of weeds up as I wander to see them they love pecking over what ever you give them so I do give them a balanced diet it isn’t all cake.

Beat wishes and love Sue