One week changes everything

Last week my mum took some annual leave to spend time with me as I am not at work at the moment. What a fantastic week it was.

As some of you know my mum found it hard to accept my RA and need for a wheelchair but last week that all changed and we are now much closer :-)

The week started with the bank holiday and my dad taking me and my half sister out to celebrate our birthdays with his new girlfriend. My half sister is 15 and was a great help taking me to the toilet and cutting my dinner, my dad on the other hand........ From the moment he picked me up he was in an angry mood with me because I wasn't going fast enough. Then came my famous words I need my wheel chair! You would of thought I'd asked for him to make one, he went so angry saying I don need it I'm exaggerating well my mums response was amazing and at the age of 24 I thought I new my mum. She turned and got right in his face and quietly whispered in a scary tone put the f**king wheelchair in the boot this isn't about you this is about her. So unlike my mum she is a quiet person who never swears but it was brilliant especially in front of his new girlfriend. From then on though he refused to get it out the car, put it together or push me and left it up to my sister. I was so disgraced in the way he acted I've said I don't want to go out with him anymore.

Well from the disaster with my dad came an evening with my mum talking about how he had acted and how she felt about my RA and how I felt she felt. So even though dad was an idiot it fixed everything with mum and we are much closer now.

Tuesday came around and I had a disaster with a home hair dye that mum had applied for me. The giggles could be heard from the communal garden :-) ginger roots with grey streaks. I only wanted blonde roots.

The disaster was good though as I went to the hairdressers and dyed it bright red, it's amazing. Nobody looks at the wheelchair anymore they look and my face and talk to me instead of the chair.

On Wednesday mum and I went to Swanley market and mums confidence with the wheelchair has grown and we were going in little spaces and she was shouting excuse me to people. The talk we had changed everything.

Thursday was my birthday and I turned 24. I spent the day at blue water shopping trying on lots of clothes and buying lots to go with my new hair. We spoke about how last year everything was different and how mum was still pushing me like in a pram 24 years on. We had fun and although it wasn't a normal birthday in my wheelchair we made a promise next year I would be better and we can do whatever we like on my birthday.

For my birthday my mum brought me a Kenwood Chef Titanium Stand Mixer so I have been baking for days as it is a great help to my useless hands.

I've been baking cupcakes whilst wearing my slender tone shorts :-)

Not sure that's the proper way but I'm making room for the cupcakes :-)

The change that me and mum have gone through in the last week is great and I missed her when she went to work yesterday. We are also talking about a cruise as mum wants to take me away from normality and we think a cruise is good because everything is accessible.

Hope I haven't bored you with my diary like blog but I wanted to share the happy ending with you

Marnie x

13 Replies

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  • Hi Marnie, so happy you are back on good terms with your mom and you have sorted things out.

    Sometimes it is very difficult for our loved ones to see us in pain as they feel helpless, especially parents/husbands/wives. Most of the time they don't know what to do or say, your having a hard time accepting what is happening to you and so are they. Could this be the case with you dad? obviously you know him best, would he normally react that way or is he just scared for you and frightened of the future for you. Only you now he answer to that question.

    At least your mom is coming to terms with your RA and this is brilliant for you. Sounds like you had a fun time last week, I'm so jealous as I don't have a relationship with my mom,long story.

    The mixer sounds fab I have a similar one and it's fantastic, takes all the hard work out of cake making. I also have a food processor which is great for pastry, one thing I have never made, just bought some from the supermarket and got my hubby to roll it out if i couldn't. Yesterday though I made some in the food processor and it's in the fridge now waiting to be made into apple pies today!! yummy.

    Happy birthday too for last week.

    Next year you will be so much better I'm sure, no wheelchair! that needs to be your goal for next birthday!! Positive thinking Marnie you will get better!!

    along with some proper treatment of course.

    Good to see you back on site.

    take care

    mand xx

  • Hi Marnie,

    I too have a wheelchair, my doctor actually got me an electric one last year and this has made a massive difference to my life getting about I no longer need to reliey on others.

    I too had negative comments but luckily not from my mum or dad as they seen the after effects and the colour drain from my face with pain after just a short walk, then I would end up in bed for days crippled with back, knee and hip pain.

    I use my wheelchair now to get me out and about and it allows me to live more independently.

    I've even had negative comments from other ra suffers who don't need a chair or sticks and they ask why I need them.

    Well my reasons are due to pain and fatigue mainly.

    If I stand or walk for more than a few minutes then I get immense pain in my lower back, I also get knee and hip pains and they feel like they are going to dislocate if I do to much, I do gentle exercise like hydrotherapy to keep moving and mobile ish but i need to use my wheelchair or I suffer.

    Speak to your doctor (If it was your doctor you got your wheelchair from) and ask him if he thinks you could get an electric one, I didn't need to ask my doctor sorted mine as if also thought me having more indepedance would help with my depression and it certainly did.

    Glad you enjoyed your birthday x

    Take care

    Julie x X

  • I just went and brought mine from halfords. Would love an electric one haven't been out on my own now for over a month and ive always been an independent person.

    I've got to ask the dr about getting an OT so will ask about the wheelchair too.

    Take care

    Marnie

    X

  • what a great blog.. cup cakes.. love it.. so sorry your parents were like that.. Hopefully they both understand better now.!

    . Im v fortunate, I can still short distances albeit in pain and with a stick, or sticks if v bad.. so I am more fortunate.. you have an amazing postive attitude. you should be proud!.

    Can you do me one favour though? post a pic of either your cup cakes or your new red hair!! im sure it is great.. much better than the black non person one!

    A cruise how fab that sounds lovely a nice holiday with some sun is a great prescription for feeling better!! can some one write me one for a cruise?? xx

    Summer x

  • I will fire up the old laptop tomorrow to post some piccies! I can't seem to do it from my iPad.

    Marnie x

  • What a great read - lovely to hear the bond between your mother and you, you have not let your dad spoil your week at all. You sound such a spirited and fun person coping with so much at such a young age. Isn't it wierd how people close to us react to the ra, hopefully your dad will rethink the day and you will get as much support from him as well. But your upbeat blog made me feel good as well so thankyou.

  • DITTO!!!:)

    Sorry to jump in Mads but you said what I wanted to say to Marnie :)

    Loved your blog Marnie x

  • HI Marnie. What a great blog! So glad you have managed to sort stuff out with Mum. Like me and my daughter but in reverse. She is so understanding now after being so much in denial. :-)

    I can thoroughly recommend a cruise, they are brilliant. chose a nice big ship then you won't feel it rocking! If you wait until the last few months, there are some great savings to be made on accommodation. We just booked another for next May (the med this time and I can't wait) Only thing is trying to save up enough - fingers crossed!

    Take care

    Julie xxx

  • Hi Marnie, so glad your mum has come round at long last. You need all the support you can get. I think your dad has some explaining and apologising to do after the way he treated you.

    I have to use a wheelchair when travelling but can manage to walk short distances with my stick (although with my shoulder playing up, it is very painful).

    I agree with Julie - go on a cruise - we have done two now and had a fantastic time. We went with Royal Carribbean and nothing was too much trouble and the food was great. Also the various ports of call. Full time doctor and medical surgery on board in case of problems. We did the Baltic to St. Petersburg last August and the year before flew out to Venice and round the

    Med. So hope you find something to suit. LavendarLady x

  • Hi Marnie,

    I just loved reading your blog, as I am probably your mums age. I have a 20 year old daughter & a 25 year old daughter, both live at home and do absolutely nothing to help me, very self obsorbed ladies, although they seemed very upset when I was diagnosed, they really have left everything to me. I wish in one way they could understand. I am not too bad with RA, well its not visible, but I suffer same as everyone else most days.

    I really wish my daughter understood, but hope they never really do, because that would mean they had RA too.

    Lovely blog, well said, Gina.

  • Hi Gina, sorry your girls are still not understanding how you feel. As they still live at home, they really should be helping you more. Have they seen the NRAS booklets about living with RA? Might be a good idea to stuff a couple in their Xmas stockings!

    The trouble with RA is exactly that = it is not visible, unless you are so bad it is apparent from crippled up fingers etc that something is badly wrong.

    A lot of people seem surprised that it is not more physical and don't understand the pain we suffer.

    I am lucky with my son and daughter in law as her mother has RA as well so they both know what it is like.

    LavendarLady x

  • Hi - this is a lovely heart warming blog Marnie although I'm sorry about your dad. Parents can be irrational though as your mum was initially so hopefully your dad will see sense soon too.

    I know I would feel a great range of different emotions if one of my sons became wheelchair bound with a disease like RA. Of course we all hope we wouldn't behave in this manner but fear and worry account for a lot. Didn't you say that he had gone back into that resteraunt and given the proprietors a bol***king re the disabled toilet? He can't be so bad if he did that - probably still in shock/ denial or whatever about what is happening to his beloved daughter.

    So delighted about to learn about your mum turning things round at least though. Mine would have been the same - initially angry with me and then totally loving once she had absorbed the things that were happening to her child. In fact she probably would have exhausted me and my dad with all her concerns and solicitations and we would have exchanged many a wink about her in the long run! I really feel for you and am sure things will get better and you will be out of that wheelchair this time next year if that's your aspiration. Love Tilda xxx

  • Hi Marnie,

    Belated Birthday Wishes ! - and it's great to hear you being so upbeat:-)

    Cece x

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