One In Seven Million: The Fight For Chronic Pain Sufferers Gets Personal.

Susan Archibald tells the extraordinary story of her fight with the Scottish Parliament – at great personal cost – on behalf of the disabled.

IT WAS a tough week for me this one as this was the week when thoughts I had locked away had to be reflected on to benefit my peers who suffer from chronic pain as I was giving evidence in the Scottish Parliament on my chronic pain petition see here http://www.scottish.parliament.uk/GettingInvolved/Petitions/chronicpain

I’ve been working with the cross-party group since last April to draft this to get what people with chronic pain need, as for far too many years there has not been enough information, awareness and even treatment to help the millions of people in the UK who suffer from this.  My friend Dorothy Grace Elder who is a former MSP and Journalist wrote this article
http://thinkscotland.org/thinkculture/articles.html?read_full=11809 
and was also there with me to give evidence and I am really glad she was as the bits I didnae say, she did, and vice versa. We were a great duo and held no prisoners .

I have to say though, from the weekend I had not been keeping as well as normal but I realise now it was the build up till Tuesday as when I got in there to give my evidence I got very emotional and upset but did manage to hold it together. The only thing that threw me was MSP Chris Brodie’s question about people claiming to have chronic pain then it actually turning out to be psychosomatic. Arghhh! Did I hear that right? Seriously, had he even listened to what I was saying about how I was treated in the first place when I was referred to a hospital and the doctor treated me so badly?

At this point his whole mannerism changed

Oh dinnae get me wrong – he was so nice in the first place, then he popped into the next adjoining room and spoke to the head anaesthetist  from the hospital where my operation had taken place, but the nurse realised that I could hear what was being said and shut the door.  About 5 minutes later the doctor came back in from the main door with another doctor with him. At this point his whole mannerism changed: you see that morning before I went to hospital my own doctor and my health visitor had came to my house and bandaged my knees and the front of my right foot,  cut the back of my shoe and strapped it all up as I had not been able to wear shoes and had never been out since my operation. They then bandaged the front bit of my shoe onto my foot to hold it on as although I could not feel it was blistered and did not have much skin on it as the friction of my carpets had took the skin from it.

So the doctor at the hospital had undone the bandages on my knees and front of my feet and was extremely nice to me. Before he went in the room, he asked me what was wrong and I told him I had gone into the hospital for a small surgical procedure but something went wrong and I was left with this pain in the heel of my feet that feels like someone has just burned you with a red hot poker or you have got burned from a pot while cooking.

However, the pain was there 24/7 and did not go away and the wind on your clothes or water made it 10 times worse and although it was still a nightmare, it eventually settled a little and that I did not know until after my operation that when I tried to get out my bed I just fell to the floor as I did not know that my right leg would not work.

So of course while I was telling him all this I would be upset would you not: one day you are fit and active and the next day you can hardly do anything? What a life back then, even the morning after my operation when the nurses tried to help me in the shower I did not know then the water would make it worse but cried while telling him as I had never told anyone else except my own doctor and health visitor, eh.

I had never been so humiliated in my life

So like I said above, when he came back into the room, my clothes were over the other side and he said to me I was to put them back on myself and stood and watched then said he was going to do two  things for me: 1) was to refer me to a psychiatrist as I obviously needed one as who else would scrape their own legs and cut up  their shoes to look like that – but I hadnae: my own doctor and health visitor had eh, and 2) he was going to refer me to the pain clinic.  I never knew what that was then eh, but I do know that I had never been so humiliated in my life and would never have believed any doctor would have treated me like that, but he did eh?

When I got dressed, and on the very pair of crutches that the OT had brought me that morning, I left the hospital and went home so gutted that he could treat me like that and have told many a person never to do things without anyone else. So one hospital caused it and  doctor after another was trying to make out I was mad to cover it up eh, and I did go on to the pain clinic where I finally met a doctor that understood and said I was not mad and gave me a name for my condition: RSD/CRPS called by 2 names now but what an amazing man!

I have undergone a few scary day surgery procedures. One was a bear block: they cut off the circulation in your leg and put an anaesthetic on the bottom of your feet but it’s very risky because if anything happens to the air machine, that’s it! The anaesthetic would just come right up and round yer heart. Ma husband signed off on this the first time for me but refused to sign it a second so had to get ma mum to do it. You have to realise I was so desperate in the beginning I would have tried anything and even asked if he could cut off my leg but he said no, eh.

The next thing I tried was to have a small section cut out of my back at the bottom of my spine so phenol could be put in the cavity but I never realised until I got there that  I would not be able to get any pain relief until after it had been done as he needed me to be awake but also to feel as he inserted it into my cavity.  All I had was a towel to bite onto and I remember him saying that women had a far higher pain tolerance than men! At that point, I had tried drugs from here, Calcitonin nasal sprays from Sweden – you name it I tried it. The doctor had said that some time the condition spreads but as I went home later that night in so much pain and as the next day came, I thought it was fast in spreading as I had a problem with the top of my left leg now as well and although the pain or burning was similar it was slightly different. When I tried to get hold of him to ask if my condition was spreading we had a chat and he said when he came back from Sweden he would look at the scans/xrays and see if anything showed up.

When we met up he told me that fennel must have slipped into another cavity causing this problem in my other leg so I thought I was to get better and ended up a bit worse. I decided at that point and time enough was enough because I couldnae afford to get any worse and basically had to learn to live and manage my own condition over the last 13 years. Fortunately, I have had so much help and support over the years from my amazing husband and family and take my hat off to all the carers out there looking after their friends and families.  I am so proud of you because it is so hard to try and understand us as our conditions also can cause depression also and all those years ago between trying to challenge my employers for to stay employed, I felt like a failure as a mother as I had 3 older children and 1 baby that I was scared that i would drop or fall asleep and not hear him cry that a decision had to be made that my baby would go to the childminder and my husband dropped him off and picked him up. But you also have to live with the fact your that bad that you cannae even look after yer baby.  There was so much running through my head at this point and the pain was immense because even when you pushed against the wall something has to snap and that something was me.

I was a very confident person before this happened to me but throughout the process I lost my friends from work, lost all other friends that just disappeared around me and I even fell out with my mum as she packed a bag and came up and said she was going to help but I had to send her away not because I didnae love her or want her help, but because I myself had to go it alone and do it all for myself. I never meant to hurt my mother and trust me I was hurting too.

I sat with a cocktail of drugs and a glass of water

Everything got on  top of me that much that one night when everyone had went to bed I sat with a cocktail of drugs and a glass of water and started to take them. Then my baby cried. Oh my God what had I done eh? A couldnae  pull meself across the floor fast enough to drink salt water which did make me very sick but at least I was a never once considered how my family would have felt if I wasnae there for them growing up and from that moment in my life I changed.

You see a had spent months listening to ma doctor saying it was nerve damage and it might get better so a woke up thinking I was going to get better every day but a didn’t. I had experienced people no longer talk to you when your in a wheelchair – it’s like were invisible and they only speak to the people who are with you. I say it’s a bit like death as people don’t know what to say when people die – “ sorry to hear about yer gran” – but some can’t so they just cross the road and walk away and the more they do, the more it becomes that they just won’t speak to you again as they can’t face it.

I took this extremely hard as I am such a sociable person and when no one talks to you it has a huge effect on yer life. So after giving my evidence which can be read here http://www.scottish.parliament.uk/parliamentarybusiness/28862.aspx?r=7663&mode=pdf ha got a call from the Scottish Parliament. It was so funny asking if they could or did I want them to change my evidence from couldnae, didnae, fae and tae to could not did not and from and to but a said Naw am proud of being Scottish and that’s how a talk so please leave it in wer no awe meant tae be the same onywy eh?

I ended up on STV news  http://news.stv.tv/politics/208954-chronic-pain-sufferers-tell-msps-that-services-are-inadequate/

then Scotland tonight and on the BBC’ website http://www.bbc.co.uk/news/uk-scotland-scotland-politics-20946437

Scottish Herald http://www.heraldscotland.com/politics/political-news/committee-hears-of-silent-suffering-of-thousands-who-live-with-chronic-pain.19860376 and this is only the beginning as I also have the support of Anne McKechin MP who will raise debates and questions in Parliament and Baron George Foulkes who is a peer and will also raise debates and questions in The House of Lords.

I know there will be a story in the Sunday Post today and the lovely Lesley Riddoch is also writing her column on it also have few stories going in fife papers and Hollyrood magazine will also cover it and I say the more the merrier eh as we have to raise so much awareness of this to get everyone the support they need.

My biggest concern to date is Welfare Reform as there are millions of people all over the country that are going to have their benefits taken off them and declared fit for work. Many will be stripped of their DLA in next few months and the doctors that think they are over stretched right now with a high rise of patients needing  medical reports will not be able to cope when the new PIP starts assessing as every single person on DLA will be re assessed putting even more strain on GP’s and medical services particularly those supporting mental health.

If you would like to reply to this article please email @archibal3@aol.com or you can find me on twitter @susanas4321

Source