If a consultant told you to go on a Pain Management Programme I’m guessing your first thoughts would be “not sure this is for me” or “I’ve heard mixed reports about them” or “what am I going to get out of it” and to be honest those things went through my head too. I have a fabulous Pain Consultant; the dashing Mr Huntley, and he talked me through what to expect and that he thought because of my positive outlook I would benefit from the course. So I went on the waiting list for a programme close through home that isn’t residential.
I’ve just finished Week 1 of 4. Thankfully it’s 2 days a week and run by a team specialising in chronic pain. Sitting in the room at our local YMCA I was apprehensive for a number of reasons including would I be able to sit from 9.30 - 4.30 and was I going to be expected to do exercises that would hurt, put me into flare or pop a joint. My fears and apprehensions were unfounded. The group is made up of 9 people all suffering with long term pain conditions. We all introduced ourselves and gave a brief background to our pain history. It was so refreshing to be in a room of people where everyone understands and “gets you”. The pain team are very understanding and know how hard living with long term chronic pain is. They are genuinely there to help us get our heads round our own situations and adapt effective coping mechanisms so we don’t have to rely so heavily on opioid based medications, which, lets face it are bloody awful drugs with horrendous side effects.
The first 2 days have been exhausting and on day one my eye lids were heavy as the freight train that brings relentless fatigue hits me. Theory based information talks are interspersed with practical activities to keep our stiff bodies moving and a little bit of team building to build up trust and friendships within the group. I can honestly say that I’ve met some amazing people this week and I know we’ll keep in contact after the course. The funny thing about living with a long term condition that’s invisible and has chronic pain at the core is that you learn what and who are important to you. You meet people who truly understand what you’re going through and how you feel. Others fall by the wayside, you learn who are your true friends. I have always believed that people come into your life for a reason and leave for a reason or when their purpose has been fulfilled (a bit like Nanny McPhee) There are fair weather friends and friends for all seasons. It’s the friends for all seasons that are important and will pick you up when you fall. Laugh with you, cry with you and see the pain behind your eyes and the “I’m fine”
I’ll be going into week 2 with an open mind and looking forward to learning new coping mechanisms. For anyone that’s offered a pain management programme don’t poo poo it and think you’re being fobbed off. Go in with an open mind, you might be pleasantly surprised and if nothing else you will meet people who truly understand what you’re going through and how you feel .
Wednesday 18 April 2018
Thursday 12 April 2018
Disabled at Disneyland
We have just spent a Magical but exhausting and at times painful couple of days at Disneyland Paris. The trip was arranged by my daughters stage school who had the amazing experience of dancing on the stage at Videotropolis in Discovery Land.
We set of early to get to the coach pick up point in Barking. Laden with bags and suitcases, we made our way on public transport with the chariot and crutches. The children chatting excitedly about which ride they’ll go on and which characters they may see. The days leading up to the trip I was worried about the journey and how I would cope on the coach for an extended period of time. Luckily our coach was a luxury coach with better leg room and comfy seats but it was still hard going on my back and hips resulting in stiffness and pain. We had regular stops to stretch our legs and use the facilities.
After a restful nights sleep we headed to the park for the stage school dancers to do their tech run ahead of their performance. While this was going on I made my way to City Hall with my blue badge and a couple of friends to get a Green Pass which enables disabled people to jump to the beginning of the queues for rides and character meetings so you don’t have to stand for extended periods of time. This worked really well for us as we could be accompanied by 4 people. In our group there was 2 green passes which meant 10 people could be fast passed to the front of the queue. For anyone who has any form of disability from sensory to mobility the green pass is a massive help.
The girls danced like professionals and feedback given by many people including Disney staff was that their performance was one of the best they have had for a long time .
Tips for anyone with any mobility challenges are to pace yourself. Beware that people are not so aware of their surroundings and knock into you, cut across you. If you’re using a wheelchair you could get the occsssional bag in your face but please do not let other peoples ignorance’s marr your experience of Disneyland. There are points along the parade route and the illuminations at the end of the day for green pass holders to sit or stand so they have a good view. The busiest times where the crowds are the parades and the illuminations. Make sure you have someone with you.
When you travel as a large group you certainly find out who your friends are and who only really wants to know you because you have something they want/need or they need/want you to do something for them. Thank goodness for our little group. They kept me safe and sane. These last few days have really shown me who want to know me for me, appreciate the efforts I made in getting the girls ready doing their hairs, and those who pretty much used me. I started doing hair the night we arrived finishing just before midnight and started the following morning at 6.20am with stiff sore hands. I didn’t do all the hairs but I must have done 3/4 of the group. Walking round I heard a few underhand comments about being at to jump the queue and being one of the last back to the coach after the illuminations. I ended up using the wheelchair and cradled a 5 year old who had fallen asleep after an action packed day. Walking was painful, standing was painful, sitting was painful but it was all worth it because I got to see my daughter, sons and their friends make memories that will last a lifetime. I’ve survived on caffeine and painkillers. It’s going to take a week to recover.
I couldn’t have made it without my lovely hubby who is in pain himself and waiting to find out if he needs hip surgery. Also The Sarah’s, Lisa (my crip in crime ) Sue, Dee and the dancers in our group . You guys made the trip fantastic. Good company, support, laughter. Thank you for asking if I was ok, it means more than you know xxx
We set of early to get to the coach pick up point in Barking. Laden with bags and suitcases, we made our way on public transport with the chariot and crutches. The children chatting excitedly about which ride they’ll go on and which characters they may see. The days leading up to the trip I was worried about the journey and how I would cope on the coach for an extended period of time. Luckily our coach was a luxury coach with better leg room and comfy seats but it was still hard going on my back and hips resulting in stiffness and pain. We had regular stops to stretch our legs and use the facilities.
After a restful nights sleep we headed to the park for the stage school dancers to do their tech run ahead of their performance. While this was going on I made my way to City Hall with my blue badge and a couple of friends to get a Green Pass which enables disabled people to jump to the beginning of the queues for rides and character meetings so you don’t have to stand for extended periods of time. This worked really well for us as we could be accompanied by 4 people. In our group there was 2 green passes which meant 10 people could be fast passed to the front of the queue. For anyone who has any form of disability from sensory to mobility the green pass is a massive help.
The girls danced like professionals and feedback given by many people including Disney staff was that their performance was one of the best they have had for a long time .
Tips for anyone with any mobility challenges are to pace yourself. Beware that people are not so aware of their surroundings and knock into you, cut across you. If you’re using a wheelchair you could get the occsssional bag in your face but please do not let other peoples ignorance’s marr your experience of Disneyland. There are points along the parade route and the illuminations at the end of the day for green pass holders to sit or stand so they have a good view. The busiest times where the crowds are the parades and the illuminations. Make sure you have someone with you.
When you travel as a large group you certainly find out who your friends are and who only really wants to know you because you have something they want/need or they need/want you to do something for them. Thank goodness for our little group. They kept me safe and sane. These last few days have really shown me who want to know me for me, appreciate the efforts I made in getting the girls ready doing their hairs, and those who pretty much used me. I started doing hair the night we arrived finishing just before midnight and started the following morning at 6.20am with stiff sore hands. I didn’t do all the hairs but I must have done 3/4 of the group. Walking round I heard a few underhand comments about being at to jump the queue and being one of the last back to the coach after the illuminations. I ended up using the wheelchair and cradled a 5 year old who had fallen asleep after an action packed day. Walking was painful, standing was painful, sitting was painful but it was all worth it because I got to see my daughter, sons and their friends make memories that will last a lifetime. I’ve survived on caffeine and painkillers. It’s going to take a week to recover.
I couldn’t have made it without my lovely hubby who is in pain himself and waiting to find out if he needs hip surgery. Also The Sarah’s, Lisa (my crip in crime ) Sue, Dee and the dancers in our group . You guys made the trip fantastic. Good company, support, laughter. Thank you for asking if I was ok, it means more than you know xxx
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