LINK pain management programme

Last Monday was the first session of the LINK pain management programme at UCLH. I had to be up at the crack of dawn to catch the train from Nottingham to London and I was even up early enough to see Hubby before he left for work so it must have been proper early!!  After getting dressed I finished packing my case then did the kids packed lunches to save my parents a job. They're looking after the kids as I'm staying overnight at Bestie's to break up the journey. Plus it's my god daughters birthday so it was perfect timing (the return train fare was soooo much cheaper on Tuesday morning than Monday evening but don't tell my god daughter that- it's totally about her birthday!) 

I decided that I couldn't be doing with having to catch a bus in the dark and then having a 10 plus minute walk to the station so instead I treated myself to a cab. When it arrived Big Fella suddenly got all upset and clung to me begging me not to go. I think that he gets frightened that if I'm going to hospital then I must be ill again and that I will go and not come back for weeks or even months. I tried my best to explain but sometimes you just can't reason with a crying kid so I pulled him off me, handed him over to my mum and made a dash for the cab. It broke my heart but sometimes doing it that way is better- like pulling off a plaster. 

I was full of hope on the way down for the first session. I was feeling that this could be the start of something good. The pain that I've been left in seems to be seen by the doctors as just as an unfortunate side effect. I've been told that there's nothing that can be done to make the pain any better and that I'm going to have to learn to live with it. Hopefully this course will help me to do just that. When I arrived at the hotel meeting room that the hospital had rented for the course I was out of breath and sweaty from my walk from Russell Square tube station. I had expected there to be about 15 of us on the course but there were just  7 women there. We had to introduce ourselves and I said that I had travelled from Nottingham but when they started saying that there were from all over the country I was shocked. They had come from Kent, Suffolk, Hertfordshire, Plymouth and one lady had even flown in from Belfast! She was flying in on Sunday's, staying Sunday and Monday night and then going home in Tuesday's. After the formal introductions we began talking to each other and instantly began sharing details of the medical problems that has brought us together. There was no fear of being judged or having to convince someone that this pain is real- just a silent shared feeling of compassion and comradeship amongst the group. But listening to their tales of bodged hysterectomies and stories of being in pain for years and years it started to dawn on me that this was the last chance saloon for us all. Nobody had been able to fix our bodies so now they were trying to fix our minds. They wanted to get us to accept our situation and make changes to our lives that might give us a better quality of life or make the days more bearable but that was all that they were going to do. There was no cures, no new drugs that they had been holding back to give just to us, no answers for all the questions that we had. This was reinforced when we had a talk from one of the pain consultants. I thought that if a consultant had taken time out from her busy day to come and talk to us that she must have something new or interesting to deliver. But after her speaking for an hour I wasn't alone in thinking that it was a complete waste of her time. She went over incredibly basic stuff (info that could have easily gotten from a quick Google search - if you didn't already know it) and left us feeling pretty deflated. 

After lunch we had a session delivered by one of the physiotherapists about pacing ourselves. Instead of having days where we do too much and then days where we can't get out of bed we should pace ourselves and do little and often. Very sensible and something that I am trying to apply but it only really works for optional activities. Yes I can make the choice to do a small food shop from the local shops every few days instead of doing a massive one from a huge supermarket but I can't choose to only do the school drop offs when the pick ups have to be done. I suppose I can ask for help but don't want to end up relying completely on other people. 

After the course finished finished for the day I headed over to Besties. Two tubes, an overground train and a taxi later I was sitting in her living room singing happy birthday to my Goddaughter. It was lovely to be back at Besties house and made me realise just how much I had been missing her. It hard not seeing each other every day like we used to but the times we do see each other now seem more special. I had to head home on Tuesday and left to do the return journey after doing the morning school run. I was back in Nottingham in time to pick the kids up from school but after making them dinner I sat down and must have fallen asleep cause when I next opened my eyes it was after 9pm! 

Wednesday, Thursday and Friday were spent in bed, sleeping at every available opportunity. I was so exhausted from the traveling and the attention that the course had required me to give that I just couldn't function. I started to feel a bit better over the weekend but I knew that Monday was coming around fast and I would have to do it all over again. To be honest I probably wouldn't have gone back for the second session if I hadn't already bought my train ticket. 

Waking up yesterday I felt as though I hadn't slept and had to muster the energy to get everything ready for myself and the kids and be ready to go out early doors in order to catch the train. We had been asked to think what goals or aims we have in life and what we wanted to get out of the course. I hadn't had the energy to do it in the week and I wanted to spend time with Hubby and the kids over the weekend so it didn't get done then either so I had planned to do this on the train on Monday morning. But I was so tired my brain wasn't thinking straight so I decided to watch a movie on the iPad instead. Before I knew it the train was pulling into St Pancras station and it was time to join the Monday morning humdrum of central London. I felt like a naughty school girl not doing her homework! But I do recommend Made in Dagenham. It's not 100% factually accurate (what movies are?) but it was a nice feel good film. Perfect for a Monday morning!!

I love London. I love how you get off the train and the relaxed atmosphere changes and everyone picks up the pace the moment their foot hits the platform. I love the busyness and the buzz you get when you're there. I miss being able to go into London and do touristy stuff. It's not like we did it all that often but it was the fact that we could if we wanted to. I know it doesn't take that long to get into London from Nottingham but it's not on our doorstep anymore. And it's not as cheap. Especially if you decide on a whim to have a day 'up town' because all the cheap fares have to be booked about 5 years in advance!

So even though I wasn't feeling great I soaked up the feel of being in London. But when I got off the tube I started feeling sick and the world started spinning around me. By the time I got to the hotel I was feeling sick and had to lie down when I got into the room. My bowel started spasming and I was in so much pain I felt sick. The first session of the day started and I stayed at the back so I could still listen but didn't distract anyone. After about 20 minutes I rejoined the group but moving had caused me so much pain that I started crying. Although they were quiet tears a few people noticed and handed me some tissues. The physiotherapist indicated for me to move to the back and came and asked me what was up (which I think was a bloody stupid question given the fact that we were on a pain management program!) On day 1 we had been encouraged to attend sessions even though we may not be having the best of days so the fact that I was there doing my best to participate and then being questioned did upset me. I know it's silly but he made me feel small and the questions he asked were just stupid and insensitive. Maybe he thought he was doing the right thing and maybe the fact I was in pain clouded my judgement of the situation but I would have thought that someone that does this all the time would have been able to handle the situation a bit better. 

So the second day didn't get off to the best start and to be honest it didn't really get much better. I had really high hopes for this course but so far it seems that I'm going to be left disappointed. The pain management programme is three pronged: medication, physiotherapy and psychotherapy. The latter is based on CBT methods and we were told that while they couldn't fix our bodies and take our pain away they will try to change our thoughts towards the pain and the situation that we're in. To me it just seems like therapy mumbo jumbo and the fact that we are dragging ourself to these sessions, half killing ourselves in the process for what just seems like a load of old bollocks makes me really cross. It could be that at the end of the course I take all of this back and say it was amazing but at the moment I'm thinking that I don't want to keep going with it. Hubby and my Mum are wanting me to carry on, to give it more time and see if it gets better so I've said I will do one more session and then make up my mind. One of the ladies said that she felt the same and that she thought that all she was going to gain from doing this course was 6 more friends. To be honest though I have enough friends to try and keep in touch with at the moment but then my Mum chastised me and reminded me that some of the other ladies might need 6 friends. That there are some ladies whose friends will have dropped them like a hot potato when they became ill and unreliable or their husband/partner will have left them and they're isolated and lonely and that getting 6 friends who they can talk to and who will understand them will feel like winning the lottery for some people. I know I'm lucky though. My friends are bloody amazing. Family are obliged in a way to help you but friends aren't. And the fact that all mine did and and still do and are there for me no matter what shows that I am bloody good at picking friends! Ha! You thought I was gonna get all soppy on you didn't you? 

Anyway back to the LINK programme. So far it hasn't lived up to my expectations. I'm hoping that the next session will be amazing and blow my mind but I'm not holding my breath. I will keep you updated!

NB xx