It has been a while since I updated anything here on my blog, life has slightly taken over which is a good and bad thing, bad only when if you are like me and find it hard to pace and to say ‘no.’
So this will be a short update on this particular subject matter, that being my PIP application. As you know I applied, I was swiftly rejected, I was invited to put my points across if I thought they had missed anything. I went in to Richmond Aid and they helped me put my points across, many of which in the interview had not been addressed. Though it takes ages to get the interview, it is amazingly swift to get rejections.
I was rejected again and invited to go to Tribunal if I wished to appeal.
Once again, the questions I asked were not answered. I remember the kind woman who helped me at Richmond Aid, telling me how her husband who applied for PIP had to go to tribunal. Apparently he was ex army and had been quite high up, during the Tribunal, when he was infront of a panel of people, he was reduced to tears. Shameful really that people are reduced to this state and the whole stress of it I could not face, so I left it.
There will be no tribunal for me.
However for any of you applying, I would love to hear your stories and how it progresses for you.
I got asked to write an article for Richmond Aid on Invisible Illness, though I cannot share that with you at present (as it is yet to be published), I can however share this fabulous image which really depicts how many people suffering from an Invisible Illness perceive be it correctly or incorrectly how others view them.
Being empowered by understanding for example chronic pain which is a spin off of so many Invisible Illness’s is essential as it empowers and gives one confidence to manage ones own anxities and fears with what one is suffering. This way we can help others understand what we are going through.
The last day for the Pain Management Programme has been and gone. It has taken me a while to get around to writing this post. Having been away effectively for 3 weeks I had a lot of catching up to do and off on holiday tomorrow, it couldn’t have come at a better time.
So the morning was spent very informally going over things, re-capping, seeing if there was anything else we needed to go over. It was a strange morning, a little bit of sadness was filtering through the group, for me it felt odd that I would be ‘out in the big wide world’ again very soon.
I was very excited however to have connected with a Mindfulness Author who has seen my posts and sent me their second book to read and hopefully chat about, I have a growing list of reading material now.
So everyone was ready to start the friends and family except for my husband who was 20 mins late. It was odd, I thought I would be alright if he missed some but it became apparent that I really wanted him not to miss anything, it was all important in understanding what is going on and in turn hopefully making a better living environment for all concerned.
All the professionals there took it in turns to speak about what we had covered over the 3 weeks, what it was about, what they hoped we had achieved etc.
The talks were good and surprisingly people did have questions which was great, because a genuine concern and interest.
We all got together as a group and met other’s friends, halves, work colleagues etc and have promised to stay in touch.
We all have a review at the centre again in a month then 3 months later.
Summary of the course for me.
Like most things, nothing is perfect. There were things that I felt needed improving, it felt in places like it was a touch stuck in knowledge wise a few years back. I feel the exercise routines should be generated from one to ones with everyone, this is probably the main area that I had gripes with.
There were however other parts of the course that I loved. We touched on Mindfulness, I think Mindfulness is a lifestyle choice and takes time to learn/embrace and find out about, perhaps promotion of reading material could have been implemented on this as I really do think it makes a huge difference.
The comraderie both from staff and others participating was very important and supportive. For many it was the one time we could be together in a ‘safe’ and ‘supportive’ environment with others that ‘get it’. Unfortunately none live near me but we have promised to keep in touch and have a BBQ in the Summer.
The main thing that I learned from this course that is very personal to me, is to lessen the fear, fear for me a huge barrier to all I want to achieve and this course has somehow helped me to lessen that. I have done a few other things since more on the Spiritual Area, but both science and spirituality have confirmed that I need to take more time for me, to be more ‘selfish’ some might say. I disagree that time for self isnt selfish it is necessary.
The course has been a huge challenge both emotionally and physically, very hard at times, upsetting at times, fun at times, inspirational at times, uplifting at times but most of all supportive.
I think it has been a great journey, one that I need to take the information away with me and embrace, learn and integrate in to my life!
Thank you for those who have supported me so well on this journey with your amazing comments. xxx ❤ Justine xx
I am away from tomorrow for a week, but afterwards will post some more of the photos I took and update on the other little adventures I have been on x
Today we had a re-cap day, our assessments and brought everything together over the last three weeks, touched on anything we still thought we needed information on.
We started with flare up plans, and today as expected almost, my left leg had that tingling weird sciatica kind of pain that I got last time I did the Circuit Training, so I won’t be taking this particular kind of exercise home with me.
During my assessment, we talked about ‘relationships at home’, the dynamics of dealing with noisy active children when in pain, of how one can explain as much as one wants over our ‘pain’ for others to understand. But unless people ‘want’ to understand and or help, it really does not make much difference. So in reality you have to ‘learn’ coping strategies to deal with this because life isn’t perfect is it?
The head psychologist suggested that I tend to do everything for others and don’t do anything for myself, that I should look for an activity that is just for me, that does not have any other functional purpose than just to satisfy myself, does nothing for anyone else. So perhaps a meditation group is something I might research.
We talked about my relationship with chairs, namely sitting. Talking of which my chair arrived, yay. So I will do this bit by bit,sitting in it for a little bit, not major amounts as otherwise I will just end up with a negative experience. However I might have to wait as the cats seem to have taken residence on it.
We covered about pacing, me making a timetable, not taking on too much. I already do a fair amount of exercise, it is not as if I am just sat at home doing nothing, but the fact I have to stand a lot is exhausting. I do get that blip where I need to sleep. I need to spread out what I do over the day, ie not all in the morning when I feel better, by spreading it out I might not have those real dips after lunch, plus the pain might be less late afternoon, we shall see.
I talked about my love for the Mindfulness concept, this is something I shall further and embrace fully.
In class we covered barriers again. We talked about one month and four month review. As a group we will remain in contact and support each other. We are invited to phone the clinic once we are officially discharged if we need advice and help which is good.
That is it for today, tomorrow is the last day, it is going to be very weird again to be thrown back in to the big wide world. I was nervous starting this, wondering what it would be like. I have learn’t a lot, it has been hard and emotional, I won’t lie but I can see the benefits of attending a course like this. Friendships have been made also and being in a ‘safe’ environment where everyone understands has been wonderful it will be odd to have that safe haven removed, but I am sure I will survive.
Tomorrow is Friends and Family day, that should be interesting 😀
Today we had Deep Muscle Relaxation and also Circuit Training. I am writing this the next morning and have to say my leg has flared up again, so I know it is something within the Circuit Training, not the Deep Mindful Movements as I have been fine with after effects once I have participated in this.
So, let’s start at the beginning, tiredness has set in it seems always on the 2nd day of the course of each week, I am noticing a pattern.
I forgot to say that on Tuesday we found out that one of our fellow Pain Management Participants was no longer going to be attending the course. She was always suffering the worst I think out of all of us, the first week she had a flare up and wasn’t going to come in due to the amount of pain she was in. The clinic spoke to her and asked her to try and come in. Bear in mind also she lives a fair distance away and is also having to pay for taxis and sit in another flare up situation in the car. She did however struggle to come in for just an hour and spend some one on one time with one of the clinicians.
The second week she did not come in for the last day, due to another bad flare up and I guess her pain was just too bad to be able to make the long journey in. We found out that the Pain Management Staff had told her that it would be unsuitable for her to continue the programme due to the time she had not been able to attend.
As a group we found this very hard to take on board and was quite de-motivating. I think from our point of view, we felt that this person had made a great effort to come in and was suffering the worst, she had spent money and organised to be on this course. She had also bonded with us and having other people you get on with who also suffer is a ‘huge’ thing and very important to feel you have that supportive network. We felt that as it was the second week, not the first that she should have been encouraged and allowed to continue.
The thing is we are taught about flare ups what we should do when we have a flare up. That doesn’t include having to get in to a taxi and be in a situation that really isn’t conducive at that time to the amount of pain one is in. We had felt that the clinicians would have asked her in early perhaps to go over what was missed, which is also in her hand book and been Mindful about her journey. But maybe we are missing something, maybe there are other reasons that as participants we just don’t see, but it is sad nonetheless and we will kee in contact with her.
Moving on from this, it was about activity/exercise and explaining our pain today. We had to roleplay and pretend to be someone who exists around our pain and is present a lot and or something we felt needed to understand more about our pain. I chose my husband, it was a fairly surreal experience. I had to talk as him and say what I felt about ‘me’ and my pain, what I thought she would gain from the course and or had gained. It was an interesting experiment and useful to be ‘on the other side’.
We then spent time talking about the notes and how we felt we could then be ourselves to explain better our pain.
We went in to a group of three and ended up having an open discussion as to all our thoughts and processes on this.
We touched briefly on our Pain Menu, something I had not heard of before, the things that our personal to us that contribute towards our pain.
Then we moved on to exercise. It is important for us to take away some form of desire to be more mobile within our remit, taking in to consideration the boom and bust etc.
We looked at obstacles and how we could work around those.
One of the physios described a helpful FITT system, where within your exercise routine you have Frequency, Intensity, type and time. You can alter just one of those things within your exercise routine if needs be, however not two, because it is at that stage you boom and then bust and then as a consequence give up exercise, normally due to a bad flare up.
We talked about the Deep Muscle Relaxation, what we thought of it. I felt that I would like to take away a Mindful routine but felt that the current one offered was quite bitty, disjointed, perhaps something like a Thai Chi movement would be better as more flowing and easier to remain in the moment with it.
We also talked about Circuit Training, I do feel it has caused me more problems than good. They talked about whether we thought a one on one programme would have been better, we said yes, we are all different and it would have given us much much more confidence in what we were doing.
I will however take away from this perhaps having a routine at home, some of which Jane has given me already from my Gyrotonic and have a system going that I stick to regularly.
That brings me on to the need to make a timetable…..on my to do list!
Today we went over the weekend’s progress and most of this I wrote about in my last update post.
We also did Deep Muscle at the end of the day and Visualisation, unfortunately by this point I fell asleep on and off in the latter, the speakers voice was just sooo relaxing.
However it was great to hear about everyone’s update, the things they managed to do, work on etc. Everyone seemed to have made progress and had a really positive experience which was totally uplifting. That is one of the things I am going to miss greatly is being with other people who ‘get it ‘ and with whom one can share experiences and get ‘real time’ feedback.
As well as going over the weekend, we touched again on our Values and Goals. Mine have changed slightly from having been Independence to Living a full and happy life, the former of which just being a ‘part’ of the grand picture. Independence as in being able to go out and get around on my own, without having to constantly rely on other people for most of it.
We then covered a lot of Mindfulness, about the hot cross bun of how thoughts trigger a mood, which can trigger pain, or pain can trigger thoughts which turn to mood, which can then lead to behaviour, vice versa it all goes back and forth. With Mindfulness it is capturing and stopping at the thought process, saying a ‘hello’ and not letting the ‘thoughts’ affect one so drastically, that thoughts are just thoughts, not physical things upon oneself. They are like minions tagging along for the ride made up of memories, fears and such like.
The other thing we did was exploring a physical object Mindfully, it is a hard thing to briefly explain in type, but covered in the Mindful book I mentioned in a post earlier, suffice to say apart from the experience of it, what it does do it forces one to stop and ‘take some time’ for oneself in a way, which so many of us do not do, almost a breather.
Then there was the ‘bus journey’ not literal. But thinking of the driver being us with our destination. Driving along, focused then someone gets on the ride, it might be angry, or a fearful thought, more and more get on like this, then they start making noise, consuming one’s attention. The driver ‘us’ might turn around to deal with one of them, what happens then? We go off course and don’t get to our intended destination. This is the same with thoughts how they distract and take us away form where we want to be and experience.
I have included below a poster on ‘Dealing with negative emotions’ for info.
Here is a poster on Finding Alternative Thoughts, all part of the Mindfulness and Cognitive Behavioural Therapy.
That is all for today, a fairly short one, until next time, Justine xx
Today we had our reviews to go over what we had learned, any questions etc, but first of all we started with Deep Muscle Relaxation Techniques and then Circuit Training.
However, I did go in this morning with my left buttock in pain, deep in to the buttock muscle, pins and needles in my feet and tingling down my left leg. I had never had this before and am convinced it is from doing this Circuit Training, perhaps one exercise or two that my body really does not like and I really don’t want to add pains that I have never had before.
So I did the circuit training but really quietened it down, however the leg was still feeling bad.
During our Assessment time we had an opportunity to go and talk to various people to ask questions. I voiced my concerns with my leg, that I think I am already pretty active, but am very willing to have a set of exercises to do at home. But I really want ones that will either help improve my posture and or work the areas that I am not working with the current activity levels I embrace already.
I did voice that a couple of the exercises felt ‘wrong’ to me and was told that actually those exercises are going to either be changed or taken out of the circuit training, phew is all I can say.
During my ‘actual; assessment we talked about ‘one’ thing we should all do this weekend as a change or improvement. I have chosen to cut down one piece of medication and see how I go, so I discussed this and the best way to go around it.
I also discussed about friendships, my intention to make contact with a couple of friends that I had become distanced from since having chronic pain.
My other thing is that I need to have a more positive frame of mind when it comes to sitting and chairs etc. For me, I see chairs as the enemy, just pain givers, it is something that happens even just looking at them and I realize the situation will never get better unless I ‘try’ to work on this somewhat. I will try to work out ways to have a more positive attitude.
I also need to pace myself better, to work on a timetable, which is something also that I am going to do.
I have my kids book on chronic pain which I am going to read to my children over the weekend. I hope this will help them.
Now to go on to the article below, I copied this, because I still feel that though I am resigned to having chronic pain, perhaps for the rest of my life, I will still seek to improve my pain levels and or hope to get rid of it, because I am an eternal optimist however I won’t send myself going mad that I will discover some amazing thing that will just take it away.
So I don’t know if this is all progress, I hope it is.
I am writing this on Monday, yup not following my rule of writing it on the day and I have made some changes.
Medication – First of all I cut down one codrydamol, the evening one. Oddly and it may be a coincidence or something else, the first night I was so so hot and the second night (Sat night), literally I woke up drenched, my nighty was soaked as if i had been in the shower, the bed was horribly wet from sweat, I could not sleep on it. Luckily the third night everything ‘seemed’ to be back to normal.
Sitting – I also bought a chair, yay, it is a vintage chair but re-upholstered and stuffed etc, it apparently is an old nursing chair. I saw it some weeks ago, I just thought it looked nice. I sat in it with no idea that I would buy it so there was no pressure there and hey presto it felt comfortable. I went past the shop again and tried it with my son. He really liked it and it was still comfortable. Then I started to think about buying the chair haha. I got it! I am waiting for it to be delivered. I shall work on it day by day bit by bit for a few minutes at a time.
Friendship – Well I contacted one person who I have not seen in at least a year, it was a return message through Facebook to one of those weird chainmail letters which I really hate. However, I suggested meeting up etc, still yet to hear back.
Pacing/Time for self – Actually having been on a course all week, one of course gets behind on all the housework and things one needs to do, but also you ‘really really’ end up appreciating having at the weekend a small time slot to yourself. I was ecstatic actually. I did go out and treat myself, which I also have not done for ages. I think it is important for anyone, not just someone with a chronic illness, to ‘remember’ to take time for yourself, it’s not selfish in my mind, it is necessary.
Mindfullness & Achievements – I have been pursuing this job now for about two weeks. I finally got to have an interview today. I was initially very excited, then very nervous. I found myself walking down the road towards the interview suddenly thinking of all the things that would stand in my way and stop me getting the job, my ‘pain’ was constantly in my head and I just stopped and thought OMG what are you doing? So I reversed in my mind and totally started to think about all the great things I could offer the people I was going to see, what I could do, what I would enjoy about working there and yup thoughts are thoughts, but very powerful. Did I get the job? Still to find out.
Today was about managing Pain Medication and Sleep.
We started off with our Pain Medication, a nurse came in and described an overview of all the main types of medication, their general uses and side effects etc.
We then went through specific ones and it was a bit of an eye opener, for instance I didn’t realize that the Cocodamol I take has codeine an opiate plus paracetamol but it sits somewhere in the middle, neither one or the other.
We talked about the side effects of medication versus the reward and were invited after lengthy discussions to review whether they both equalled each other, or whether we felt we wished to reduce our medication, stop or indeed change to something else.
This is going to be a working progress the thought and decision process. The implementation process is something that we would need to get clarification with our Doctors on.
We then discussed sleep and the effects pain has upon us and medication use on sleep deprivation. How sleep deprivation affects us, the spiral that this makes with thoughts, actions and consequences.
After this we then discussed ways to help improve sleep patterns and habits. One of the main things to set up some kind of routine. There were many sensible suggestions. Luckily at night time I ‘generally’ (dont want to tempt fate), don’t have sleep problems, what I find however though is after I take my painkillers at lunch time, i take a severe energy dip and want to sleep, remaining awake and fully functioning can be a tall order, especially as my pain levels then start to pile up.
Having the afternoon talk about sleep i did indeed unfortunately fall asleep on and off, it was like someone had given me a sleeping pill, i think a few others felt the same, though no snoring was heard. Even though my chocolate brownies were a grand success they didn’t seem to inject enough sugar boost to keep us as alert as I think the teacher would like, but a very useful session nonetheless 😉
Pain Management Programme Day 7
Pain Management Programme Day 7
Pain Management Programme Day 7
Pain Management Programme Day 7
We finished off the day with our Deep Muscle Relaxation exercises, I feel I am getting better and better at this, but don’t want to tempt fate by speaking too soon.
I have also included some photos of recommended book reading by the PMP Programme, if you click on each individual photo you should be able to bring up large versions if you are interested in getting the full names etc from the spines to order one from say Amazon, where I have got mine from .