A Little Help From…..

I’ve not blogged much the past few days. We’ve been busy sorting out applications left right and centre to get some mobility assistance to keep me working & generally safe in the house. There’s been the 13 page additional statement for the PIP form that I’ve finally completed (I’ll do a separate post about it later, but suffice to say, it doesn’t fill you with masses of self respect ), contacting Access To Work to help with ramps at school and help with getting my chair in and out of the car, and handing over unspeakable volumes of cash to get a stairlift installed.


So yes, I’m 2 months shy of turning 36 and I’m having my own personal roller coaster installed. It’s just slower than you’d hope (no loops). And I’m not wholly sure I can get my head around using it just yet, which is a shame considering that it costs over £5k to install  (Getting ill apparently equates to hemorrhaging money).


I missed a call from Adult social services today for a phone assessment for occupational health. There’s an irony to not being able to answer the phone to occupational health because you’re at work. *facepalm*

Still, at least unlike the PIP trauma, I’m not having to prove how shit I am to get assistance from Access to Work or Occupational Health – a diagnosis is enough. They genuinely feel like they want to help. There’s a general feeling of disinterest for any disability assistance from central government sources -A friend asked if I’d give feedback on the new online form for PIP – for the first time in a long time I couldn’t bring myself to even look. I felt demoralised and dehumanised by that form & the idea of going through all of that again in person in an interview just makes me want to cry. On the flipside, work are being so wonderfully supportive and are absolutely living up to their motto of being a place that people want to come to. Management genuinely feel like they care and I had the most touching email from a student thanking me for not giving up on them even when my own life is falling apart.

I only wish these guys would take a leaf out of my employers book.


Work & Mr Geek are giving me back much of the self esteem that form kicked out of me and I’m starting to feel like my badass self again. I know it’s really bad taste, but I need to laugh at myself and Cartman just says it best.


4 thoughts on “A Little Help From…..

  1. Fight On Soldier! Good to hear your husband and your work and students are in your corner. They who know you best know what you go through to be there for them!


  2. WOW poor you.
    I have eds hypermobility too but unlike you I don’t have the support of a husband and could probably never cope with full time work again.
    I do have 4 children to care for and have the help of adult social services too. I have to say that it what quite unfair of you to belittle them in the way you did. Having worked in healthcare until 3 years ago ( yes eds was the reason for stopping) I know firsthand how busy they are. How little funding they have and still they are expected to do the work of 2 or maybe 3 people.
    What they don’t need is uppity people who think they are the only ill ones, or they take precedence over others. Fine, you need help, thousands do, but have a little patience and compassion. There are others who have more urgent needs.
    As for your other posts, they were so self absorbed and mind numbingly boring that I think I may have found a cure for my insomnia 😊
    Gentle hugs x


    • Thank you for taking the time to post. As you may have been aware from this post I was actually a social worker before changing careers, so understand their caseload & funding issues perfectly. That is no excuse for not listening.

      This is also my blog, part of post diagnosis therapy. This is my space to be self absorbed and work through my frustrations in a healthy way so that in reality I can set it aside and just get on with life.

      I certainly won’t judge you for having an opinion on my writing, just like I don’t like to compare myself to others with EDS as it’s an individual thing for each of us. However, what a shame that you felt the need to be quite so publicly unkind.


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