Lynley's Story

I sit here writing to you from my bedroom on a Monday morning. Not an odd sentence normally, but for me, a 49 year old ex-Head of Department of a 1400 pupil secondary school, this is not where I am supposed to be. Even after two years, it still feels very weird to spend Sunday nights actually watching TV rather than getting my marking finished or preparing lessons, and weirder still to be sat here on a Monday morning.

My so called 'normal' life ended just over two years ago. Whilst teaching a class-full of boisterous 15 year olds, I suffered a catastrophic spontaneous fracture to my pelvis. I recall feeling the most horrendous pain and having to hang on to the desk until the end of the lesson. After the fracture was discovered through an MRI scan, I was consequently diagnosed with underlying osteoporosis which had caused the fracture. This in turn had damaged nerves in the sacral region and has now left me with permanent chronic pain syndrome. This is now my 'new' life: I cannot stand without crutches, cannot walk at all due to severe pain and need to use a wheelchair to get around. A new life which involves cocktails of medications to keep me from screaming in pain, pacing myself and doing only what is manageable so as to not increase my pain and, most difficult of all, coming to terms with the fact that I am now disabled.

The last bit I must confess is the tricky one - how do I get used to this life when my 'normal' one was so crazily busy? Rushing around teaching five different classes every day, with all the after school activities and out of term school outings, to a new routine where I can't go anywhere without having someone to accompany me. I need my partner to help me do everything and that has obviously changed our relationship. There's a whole list of things I 'can't' do; I can't work, I can't dress myself, I can't use the shower or get into the bath, I can't drive anymore, I can't do any flipping thing without pain and help. It's a very long list of things that I am now unable to do and it's taking some getting used to. I have spent the last two years getting my head around it and trying to see some kind of future for me.

However, at long last, I've managed to see some positives here. I can now spend time doing other things. I can catch up with all the box sets I heard people talking about while I was too busy to watch TV, I can take advantage of what my partner and I call 'retirement time' and go shopping when everyone else is in work, I have discovered a love of writing so have started to write a blog based on my experiences, and I can spend time just sitting in the garden and listening to the world. In fact, although there are now so many things I cannot do, I really have to focus on what I can do instead. I'm not saying that it's easy by any means but I have to do it in order to move on.

So, what have I learned upon my 'journey'? What new skills do I need to develop in my new life as a 'person with disabilities'? The main one to start with is that you have to be organised, keep copies of everything (doctors notes, letters, DWP forms, EVERYTHING) as you will constantly be asked to fill in forms that are exactly the same as the ones you filled in last week but for a different reason.

You also need to become a maker of checklists, especially for what you need to take with you to the hospital appointments. Don't expect doctors to have all your notes there (it rarely happens, especially if you have two or more consultants, they will never have all the notes from the other doctor's appointment), so get a copy of the appointment notes by getting in touch with the consultant's secretary – and remember to keep her/him on side, they are an essential ally!

If you want to go away, you'll need another list; even a short weekend away takes on a list of mammoth proportions when you have to ask about disabled rooms, ramp access, disabled parking, hoists for the swimming pool, access within the hotel/cottage (etc.). You'll need a holiday just to get over booking this one! Unfortunately, the world where you could grab a bargain last minute deal and just grab a bag and go has... grabbed a bag and gone, as that cannot be done if you use a wheelchair! But with a patient persona and a friendly telephone voice, you can still have a break away; just make sure they have what you need from your list!!

Above all else, patience and a sense of humour are essential. There will be times when the hurdles seem too high and nothing feels like it's going your way; this is when taking a deep breath and putting on a wry smile with an unmuttered 'for #*#*! sake' will take you a long way. There are many challenges ahead and some of them will feel like you will never manage to adapt to this 'new life', but you will. Little by little you will learn how to function and get your life back, albeit different from the one you expected and that's the key. There is a life for you out there BUT it is going to be different and accepting that is another challenge that you will have to face. Allow yourself to grieve for your former life, clinging onto the 'old' life is natural and understandable but in some ways, this will just bring its own grief and whilst it has taken me quite a while, I have found that letting go of what, or how, you used to do things is essential in order to move on.

I think I'm what is usually called a 'work in progress': I'm trying but not I'm not quite there yet. This 'adapting' lark is a tricky one, but I will get there eventually, I'm too keen on living to let this stop me!

You can continue to follow Lynley's journey by visiting her blog – topladytalks.com

Do you have a pain story that you would like to share? If so, email cloudypain@manchester.ac.uk and we will help you to pull your experiences together. Stories can be completely anonymous if preferred.