Hi, my name is Marie131963! — Scope | Disability forum
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Hi, my name is Marie131963!

Marie131963 Member Posts: 12 Connected
Hello I am Marie I am 56 suffered from Multiple Sclerosis since 1996, I have a 16 year old son with Aspergers and a 19 year old daughter who now suffers with OCD, Anxiety and I also think she has aspergers but not diagnosed. I've been married 26years to a Kiwi who came to see his fathers home in Liverpool ended up staying since the 1980s and we married in 1994 I spent a good number of years working in a few types of  pharmacy as a pharmacy technician, I had to retired due to ill health but never coped well so I am studying with the open university now on my final module for my open degree BSc Hons, Originally chemistry based but about half have been mental illness and social problem based as I care about people. May be one day I can use this and my previous counselling skills to level 3 in some sort of voluntary listening and support in some capacity as there are so many people in pain and no one to turn too.

I used to love gardening now I have to watch hubby and restrict myself to planting a few pots from a table. I love family tree searching and did the whole DNA thing which had some interesting results. Uni is pretty busy now until around June so no doubt I will be looking to do more then.

Look forward to hearing about some of you lovely people
Well that's my life story hope I never bored you.


  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    A warm welcome to the community @Marie131963 thank you for sharing your story. Glad to have you with us. If you need anything, or have any questions just let me know and I’ll be happy to help.
  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hi Emma Thanks for your kindness its good to know there is support I appreciate you
    Take care


  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    edited January 2020
    Hi @Marie131963 - Welcome to this both supportive & friendly community; it's good to 'meet' you. I've got a genetic disorder (the hypermobile type of Ehlers-Danlos Syndrome) which has resulted in generalised osteoarthrosis + I also have neuropathic pain due to Chiari 1 Malformation.
    Now I know who to come to if I want to discuss cytochrome p450; only joking, just found out about this complex when researching CBD, & how the majority of meds are also metabolised by such enzymes in the liver.
    It's great to read you're studying with the OU, & how you hope to use this with your counselling knowledge in the future.
    I'm fortunate that I can still potter in my small garden, which is just some raised beds & lots of containers, tho did have a small greenhouse built by my joiner added last year.
    I've seen you've also posted about your son transferring from DLA to PIP, & the unwelcome result. I also had to do this somewhat recently as an 'older' person, & didn't get the result I expected. The Health Care Professional (HCP) was lovely, but reported that because I didn't see a Pain Management, nor a Physiotherapy Specialist, I could walk 20-50 metres, rather than the 6 metres I'd been seen to walk slowly & obviously in pain. She also correctly reported me having one knee partially dislocate on the way out!
    Now the 'amusing' thing about this is that I am a physio. Something that was mentioned 3x in my claim form; something I said straightaway to the HCP, as I consider it a courtesy, & which was also in her report, & also mentioned twice in my GP's supportive letter. There's unfortunately so much that is 'cut & pasted' inappropriately, & not considering always the individual.
    That been said, you couldn't be guided further forward than by poppy123456; her knowledge of benefits is enormous, & the link to the DWP's guidelines for the HCPs is the best possible available information. I went through a Mandatory Reconsideration before I joined Scope; how I wish I'd joined earlier! Your chance of success is to listen to her, & look at that link she gave.
    I have enormous respect for her, & thespiceman too; they have helped so many people that have joined this community.

  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hello chiarieds
    Lovely to hear from you, wow you must have a few issues with the hypermobility part of your syndrome. It is awful how you where treated. I know what you mean about them disclosing your profession, I used to get that too. It used to drive me nuts I would go to the doctors say my daughter had a flair up of asthma and I would get your a pharmacy technician what would you give your daughter. A trap if you said what you thought they would get a cob. I think its so they don't talk down to you. Did you work for the NHS in physio then? Your garden sounds wonderful, we have a green house too I don't go in much because I am sensitive to heat with my MS, I manged to have a reaction to one of the steroids and blew my mitral valve so I try not to get to hot and stress my body as I get weak and dizzy in the heat hence the pots. It kills me I used to love weeding my husband has a few raised beds not high enough for me that he grows his fruit and veg. It used to be very therapeutic weeding still I enjoy watching him do it. Neither of my kids like the garden, We bought a little peach tree, the garden centre told us to leave it in the greenhouse, it was full of fruit. I am thinking of telling hubby to drag the nectarine we already had in their too. we used to get may be two a year, always loads of blossom but then the weather will turn so it may be better. We have a couple of cherry trees, and plums, plus two apples one cooking one eating. The Victoria plum is wonderful. Hubby has to get them.

    I think more people should find the joy of gardens. Poppy is amazing and Thespiceman good advice. I just have to get my son to calm down. He is either an angle or a Demon. I worry about his working life. He doesn't think he will cope at uni but is actually bright. I managed to get a work placement in a hospital pharmacy I had worked in where he knew people, he coped as long as I took him to the door and collected him and he had a work buddy who he knew. He was natural but in the real world would he get a job I think pharmacy would be good its very black and white in terms of rules. My husband is from New Zealand so my kids are dual nationals. The is much more set up for them there. My daughter is having issues now too she been under a counsellor for a year, developed OCD and I think she has autism too. In some ways she is worse than my son She is having issues with light but I managed to get some special lens glasses which might help. She failed her psychology course when we where on holiday in New Zealand summer before last, She has not been the same since. The school think the same and are trying to sort out between SENCO and counsellor how to get a diagnosis as its not just mental health. She is amazing bright red hair and proud of it. She is thinking of archaeology at Liverpool which is home so I can keep an eye on her.

    I am quite torn you don't want labels for the kids as it can be an issue but on the other hand there is extra help while studying time allowances, headphones while noise occurs. 

    The DWP seem inconsistent, my mums friend again in his 70's developed a worsening of his condition he had hardening of his arteries, mini strokes and then got cancer. A benefits adviser recommended he apply for an upgrade in his DLA, they phoned out the blue after the CAB filled the forms. He was very up beat and said he tried his best to do things, they sent a letter telling him he no longer qualified for what he had and if he chose to contest it he would  likely be investigated for fraud. So he lost what benefit he had. The poor man died 3 months later after he developed gangrene in his foot and suffered a hear attack. Such a sad situation, So when you see how others are treated. We cannot complain.

    I only found scope tonight isn't a great web site people are lovely. Pain is a terrible thing very hard to prove, Your pain must be bad with the osteoarthritis. Cannabis is supposed to be good for this type of pain but alas I don't know the ins and outs of the oil. I have been retired for quite a few years now.  I have heard many stories of cannabis brownie for such conditions. It would make a difference on the precise drugs the local pharmacies should have been given training on something so new and likely to be popular as professional development. 

    The OU have been a great experience apart from one course I had to defer on, it had a virtual microscope for a lot of the work, but when my MS is active I go colour blind in one eye and the two eyes could not focus on what I was seeing, I got very frustrated, The last couple of courses have been really rewarding on the social and mental health issues. I should be able to do something with these when finished . I might need a placement to do some more practical listening if I want to be a counsellor. 

    It is amazing how each level stretches you with the OU I never thought I would get a degree. I left school with no qualifications and had to start of working and training at night eventually I got a hospital job which led to student technician and never looked back. I always studied even when working, I quite like alternative therapies so I trained in Swedish massage, hot rock therapies and hopi candles but then the MS means my hands are in pain and have no awareness of pressure. It was good when the kids where young. I trained aromatherapy although I never took the exam pregnancy got in the way. I can go on sorry

    Its lovely chatting I am sure we will catch up again. soon

    Take care



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