I know Lynne through the school I used to teach at. In my first year of teaching, I taught her son and in my third year of teaching I was lucky enough to have Lynne working in my classroom as an SEN support assistant. I loved my job and a lot of that was down to the people I worked with who made every day, even the harder days, great. Lynne was one of those people. Every morning we would catch up whilst doing classroom jobs before the children came in and I can’t count the number of times Lynne and my teaching assistant, coincidentally also named Lynne, set off late home at the end of the day because we were all chatting away! Every day I went into work with a smile and left with a smile and Lynne was a big part of that. It was nice to work with someone who you knew had your back, who got your sense of humour and genuinely cared about you.
I knew that Lynne was in constant pain. I knew that Lynne sometimes needed a walking aid and had to have a special chair in the classroom that supported her back. I knew that we had to take into considerations Lynne’s needs in the event of a fire, but I also knew that Lynne was incredibly patient, kind and passionate about her job. I knew she cared about the children in the class as much as I did. I knew that I could trust her to keep an eye out for talking when I had to turn my back to the class and write on the board. I knew that I could trust her instincts with what was best for the children she worked with. I knew that Lynne loved her job and that together we made a great team.
Lynne’s condition didn’t hold her back from doing anything because she didn’t let it. She refused to let it. I didn’t see a woman with a walking aid or a woman in pain – I saw a strong woman who was fantastic at her job and a brilliant mum of two really great children.
This interview opened my eyes to the reality of what Lynne must experience on a daily basis. I think if anything I was quite naïve to the extent of it before. I always admired Lynne, but now I don’t think that the word admire does it justice. I don’t just admire her for working through her pain though, because she’s so much more than that. Yes she’s in pain, but she’s the woman who despite this has you in stitches with her stories, who makes notes in a little notebook that she carries with her at all times on things she spots that she thinks will really help the children, who sees you need someone to talk to and offers a listening ear. Now that’s a woman to admire.
In your own words, can you describe the condition you have?
I have a chronic pain condition called Degenerative Disc Disorder (DDD). I was told in layman’s terms that this means that the natural process of the spinal discs drying out and shrinking which happens the older we get is happening at a faster rate than it should be for my age.
How did your diagnosis first come about?
I first found out about it almost 7 years ago. We had just moved house and I was doing some unpacking and cleaning. I turned to get the hoover and was stopped in my tracks by the worst pain I had ever felt! I couldn’t move from where I was stood and felt like I couldn’t catch my breath properly for the pain I felt. Even the tiniest of movements hurt. It felt as if something had yanked really hard on something inside my lower back and the pain levels shot through my entire body.
Eventually I made it to the sofa and by this point I was sobbing. I called my mum and she came and took the kids for a few hours. All I could do was lay on the sofa.
The next morning I struggled getting out of bed and made an emergency doctor’s appointment. At the appointment I was told that I could have just pulled a muscle in my back so I had some strong painkillers given to me and made an appointment 2 weeks later. By the time the second appointment came around I was doubling over to try ease the pain as I walked and was also experiencing shooting pains down my legs and tingling that at times felt like water trickling down my legs, which was so weird to experience and look to see there was nothing there.
The doctor then decided to refer me to the physiotherapist and the musculoskeletal service. I had 6 weeks initially of physiotherapy and was sent for an MRI which confirmed a herniated disc. The physiotherapist told me that the disc should settle back in place within 6 months or worst case scenario 12/18 months, but this was not the case for me.
I was then referred to a hospital consultant who decided to start me on Epidural steroid injections. I had them a few times but they didn’t improve things for long each time.
I was told that my chosen career of working with children had impacted my spine over the years and that having children of my own kind of iced the cake. I remember after having my first child I began to experience a lot of back pain and often could feel a grinding sensation at the base of my spine when sat down. After visiting the physiotherapist when I was pregnant for the second time, I was told that I had most likely fractured the sacral joint above the coccyx and was given advice on my future needs for when the time came to give birth.
It’s really hard to try and imagine how that must feel – even reading about it makes you clench your teeth and wince. What things have you used over the years to try and help cope with the level of pain that you experience daily?
Two years on from my diagnosis, I had had one injection that felt worse even days after it. I went to see a GP and was told he couldn’t give me anything stronger than what I was already taking but instead he referred me to a pain management course for 8 weeks. The course was an insight into how to live day to day with your pain levels and how to use things like yoga or meditation to bring stress levels down as this can worsen the pain symptoms.
Eventually I began to struggle more so I got a referral to the musculoskeletal team again. When I visited the specialist this time I was told that apparently my first scan had actually picked up 2 herniated discs! She referred me for another MRI and this then took me on to the pain management team at the hospital. The findings were the same and so began more injections. These have included nerve root blocks and epidural steroids.
My last injection just before Christmas 2018 was the worst one. Even whilst being numbed up I could feel it all and it was very painful. I was told early onset arthritis in my spine had caused my joints to become very stiffened up, making it tricky to access the points that they were treating. Then as the treatment was done I was diagnosed with degeneration of the facet joints in my lower spine. So not only are my discs becoming unstable and degenerating but so are my joints. As a result I have to use walking aides on a daily basis. I have had spurts on and off where I can manage to walk without my crutches but unfortunately I have had to start using them even in school.
It’s hard for someone who isn’t experiencing what you do to understand just how painful this is, never mind how painful it is whilst working, maintaining a household and raising two children. How have you found having Degenerative Disk Disorder and working?
Having to come to terms with the fact that I have a long term condition and it’s repercussions when it comes to working hasn’t been plain sailing. After it first happened I had to be put on sick leave for quite some time so I did unfortunately lose my job at this point. Although I was feeling a mix of anger and upset, I kind of knew that it was better to have the time to try to heal without worrying about work.
Then came the horrible time of having to claim benefits. I hated the thought of letting my family down. I was also appalled at how unsympathetic a lot of the staff at the job centre were. I often left the meetings with them in tears. When someone on the opposite side of a desk holds no regard for your situation, it is such a degrading kind of experience. Eventually I saw someone who was completely sympathetic. They gave me good advice and eventually I was switched to a benefit more suitable for me.
For over 2 years I was out of work. I had interviews and even managed to get about for short amounts of time without my walking aides, but as soon as the reason for the end of my last job came up, I could always clearly see the penny drop. The end result was always the same – someone else was a bit more qualified or experienced, but I knew all too well that it was down to my back issue.
Eventually I pushed myself to get about without my crutches and tried harder with interviews to steer away from mention of my back but it always reared its ugly head somewhere along the line.
I decided one day to contact my children’s school about coming in as a volunteer to read with pupils. Before long, I began classroom volunteering and I secured a job there as a lunch time play worker. This soon lead to a part time then full time position as an SEN support assistant.
I’ve always worked with such lovely people in the school who have been very understanding. Unfortunately I’ve reached a point of needing my crutches in school full time again. I can’t help but sometimes get a vibe that my disability is restricting some things, though I have to say working with caring and understanding people who see past the disability certainly does make a difference.
Working with children is incredibly physically demanding and tiring, never mind when you are someone who is in as much pain as you are. Have you ever considered giving up working?
I often get the same response from many, many people asking ‘why on earth do I work?’ or ‘how on earth can I do it?’ The answer is simply through gritted teeth with as a big of a smile as I can manage. I just get on with it. There are times when I ask myself those same questions. Especially as the pain, the medications and working make me very tired so often and on bad days I want nothing more but to crawl back I see my duvet and stay there. BUT I always mentally kick myself up the bum and get going.
I personally just can’t get past the thoughts in my head of how I MUST work. This may sound odd to some but all I can think of is the example I set to my children. I was always brought up with a good work ethic and hope that I am displaying that to my kids too.
I really admire your determination to work and keep yourself active so that you can be the kind of role model for your children that you want to be. How do you feel about this condition and the effect that it has had on your life?
Having this condition does make life harder. At times I wonder why I just don’t give up and become a recluse for the rest of my life, but then the bigger part of me wins over. I don’t want this illness to beat me – not yet anyway. I still see 40 being quite young so I don’t want to give into it yet. It’s been hard enough over the past 7 years not only living in pain 24/7 but the restrictions to my mobility and side effects of medications have seen my weight increase massively as well as other issues cropping up relating to it.
I hate the days when I feel exhausted and pain levels are high. Mostly at the weekend or in the school holidays as I get frustrated with myself for not being able to do things with my children. However, when I can, I make sure that we get out and make the most of a day that we can. In fact, I make the most I can of everything when I can because I don’t want the situation to beat me. People say I’m strong in this way. In my own head I feel far from it but push forward each and every day.
I really hope that one day you start to view yourself as the strong person I know a lot of people view you as. Do you find that a lot of people react positively to you and your condition or have you had experiences that knock you?
I certainly have found that some people’s reactions to my situation haven’t been the greatest. I often feel overlooked due to the fact that I have my crutches to depend on. I understand how sometimes things just have to be the way they are, perhaps for safety reasons, but it still makes me feel undervalued as a person and for what I know I can do and give to others yet I am denied the opportunities. I’ve lost count of the number of times that my disability has been a deciding factor rather than my actual ability to do things. This can make me feel defeated, under valued, belittled and makes me question my choices. However I always, eventually, push down those feelings of inadequacy and tell myself that I just have to push on with life.
In general this condition can be debilitating, not only physically but quite often mentally too. Sometimes it’s frustrating when people don’t understand and clearly don’t ‘get it’. If I say I’m in pain or tired, I can get eye rolls or comments like ‘what’s new? you are always in pain’. I have also lost count the number of times people have said things to me like ‘why don’t they just operate? Why don’t you just give up work and claim? Why haven’t you demanded more from the doctors?’ Believe me a lot of these things I have dealt with already. I know that people mean well but sometimes I can’t help but wish they could swap places with me for a day to see what it’s like and then tell me about these trials of new treatments that they’ve heard about. I don’t think the conversations would happen then.
I’m even jealous of my own mum. At 60 years old she goes to the gym around 7 times per week and can move at a fair pace when we go out together. The problems with that are that I feel like a hindrance shuffling along often only going at a snails pace.
One area of really positive response is from the class I’m in has been fantastic. They queried why I had the crutches, because as many others do, they immediately assumed that I had had an accident and broken my leg, but I explained the best I could and they have been great about it. They all look out for me by opening doors for me, carrying my things between classrooms, passing me my crutch when it’s time to get up and move and telling each other off if they think someone is going to hurt my poorly back.
I really believe that educating and being open with children about a range of things including illnesses and physical differences really makes them understand the world around them and helps reduce any stigma people might feel. It sounds like by interacting with you the children have a great understanding of what you go through. What role do you think that education needs to play in ensuring that misunderstandings about disability and differences stop in the future?
As far as education is concerned I don’t think enough of us are fully aware of what the term disability actually means. It seems that so many kids are taught that the term disabled means a person in wheelchair. More education needs to be done to make children and even adults more aware that the term disability covers such an extensive range of conditions. I understand that not all of them can be covered in lessons but I do believe that they need to learn more about disability and that the younger this kind of education is given to them, then hopefully the better people’s understanding and even compassion will be for those who are classed as disabled. Too often we don’t understand what we can’t see or make assumptions based on what we can see or are aware of. I’ve experienced people who say you can’t be disabled because you can walk and talk and you work full time and to me that just screams ignorance. Even disabled people can work and so many can walk and talk and do so many other things. Each and every disability is different and more than that, each and every individual person’s way of living their lives with that disability is different too.
We as a society need to stop our ignorance of those who are different and a better show of basic, compassionate humanity will make the world we live in that bit more bearable as it were.
If you had to sum up your outlook on life, what would it be?
I think I would have to say my outlook on life is that while I may see things as life dealing me a bad hand, it has just shown me the opportunity to look at it from a different angle. Don’t give up even when it throws another curve ball your way. Instead learn how to return that ball going in the new direction.