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.
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 .
However I started off in a bit of a tizzy before I had had the chance to go in to speak to them and was having neck spasms the night before from lying on my back and cricking my neck trying to see the teacher and believe you me, neck cramps or spasms is really painful.
I went in with some trepidation and asked to speak to the physiotherapist that we had spent the afternoon with, she was very understanding and nice. I explained that I had already extended my sitting time allotment so to speak to a time where the pain markers were already pinging around my body merely by having a lift in and out, which mean’t nearly an hour and half driving time each day which usually I wouldn’t have.
So then, sitting down for lunch, then the assessment which involved sitting down, then the exercise was just too much for me. I explained about the need to factor in to my day the sitting times so I could cut it down somewhere else if possible if it was necessary at another time.
I also described to her my inability during what seemed to be a panic attack to calm myself down and this freaked me out somewhat.
Pain Management Programme
Pain Management Programme
Pain Management Programme
She explained that she would give me an outline each day of what to expect and that I needed to feel comfortable to stand up and do the daily exercises if needs be rather than sit.
Re the panic attack, I guess the Mindfulness will help with this and we will learn how to cope with this kind of thing later.
So this I took on board.
It did seem that everyone was a little worse off today in differing ways.
We spent the morning discussing, dissecting and understanding how pain affects each one of us personally, how doing the ‘difficult’ physical things effects us both mentally and physically. We compared notes, go to see what everyone else goes through. Then we went over boom and bust again, other peoples perceptions we touched on and how to manage our time to a degree.
It was good.
Then after lunch we had the option to be filmed doing an action that we find difficult, the idea that in two weeks time we would do this again and see a difference, for the positive of course. We all as a class watched the videos of ourselves too which was a rather painful moment lol. My two actions were bending whilst standing and then bending whilst sitting.
After this we had a break then the exercise time, which I did a lot of standing up, also my mind frame was different this time, I had a couple of moments when I could feel the stress factor trying to kick in at the times I did sit down, but I bore through it and it was as a whole much more bearable.
Then we had our deep muscle relaxation in which I did promptly fall asleep haha, naughty me, not for all of it but some.
I did spend a lot more time on the floor today, only because I was paying for the day before, but I am hoping by tomorrow all will be relatively calm again x
The first half of the day was ‘class time’ listening to one person talking. It is a total change of scenery, out of one’s comfort zone, exercising one’s brain listening to someone talk for quite some time on a subject matter that involves a fair bit of concentration. By the time the morning was over my brain felt like it might quite like to explode.
How pain makes us feel
We covered ‘about pain’, how it feels to us, both physically and psychologically.
We covered the fact that there is no pain that is either physical or psychological on it’s own, pain is always both.
We then covered the ‘cycle’ of pain. How the stimulus works from the external senses, to the dorsal horn which acts like a sifting section, sorting what goes where, to that then being transported to the brain, the brain then deciding what is a threat, what is urgent, what is not, to then whizzing back down to the, for example, ankle if twisted and providing pain and a physical protective reaction.
Then we discussed how with acute pain there is a period of time where the pain is there, the healing happens, the pain dissipates as the brain then sends messages that all is well and it goes back to it’s resting point.
However with chronic pain which is pain that has usually been going on over six months, the brain is on constant threat and as such starts to re-jig things about, making it always on high alert, making the nerves super sensitive so they can do their job super well. Relaying messages back promptly and quick action again and so the cycle goes on.
Though the brain and nervous system is trying to be helpful and protect, this reaction is actually not helpful at all as it causes constant pain reactions.
Then we covered the psychological effects also of historical trauma, how that makes us feel, being in ‘that’ situation again etc.
It was all great and I got it predominantly, hard going but very interesting.
Pain Management Programme
Pain Management Programme
Pain Management Programme
Pain Management Programme
We then had lunch. Now usually for me I have my allotted sitting time during the day. Sitting is my main issue which is my pain flare up factor. I wanted to be social, so I sit for a period of time with the others. It already begins to set off the pain flares, but I figure after lunch I can lie down on my mat. So I just put up with it.
After lunch we go in and are told that we are having our physical assessments. By this stage I am feeling fairly bloated, not from over eating, but IBS flare ups and pain heightened on top. The assessments involve sitting down and getting up from a chair repeatedly over a period of time whilst they time and count how many times we can do this. You can imagine my reaction to this. But I thought, ok get this over and done with, all done and dusted. Pain levels creeping up, yup I can now go and lie down on my mat as my sitting time is definitely done.
Then we are told after this is introduction to exercise time. I was not too worried about this until I am told that this involves sitting on a chair for at least 20 minutes. I am feeling somewhat anxious and stressed by this stage. I am asked infront of the class whether I can manage this. I don’t know do I? Not really, but I know I don’t really ‘want’ to try as I am already in pain, but I say “yes I will give it a go”.
It is hard in a group situation, especially so early on to say ‘no’ and I feel that I should try to do this ‘de-sensitizing’ of my pain flare up actions and see if I can start somehow to get used to it.
So I find a high up stool. Every exercise has to be held for around 3 breaths in and out. Some of the exercises involve a lot of torso work, ie bending over and virtually touching toes and chest pressed against knees.
I simply CANNOT do this.
But before we get to this ‘actual’ exercise which was the worst one, I am trying my best, listening to the teacher, saying concentrate on your breath, your sensations, what is going through your head, what you are thinking.
I am thinking this isn’t a good idea to concentrate on what I am thinking. I am thinking “I cannot do this, I hate this, I am frightened, my chest is going to go in to a spasm”, then my stomach starts to feel like it is on fire, my chest starts to tighten up, I am getting hot and sweating and feel like their is no oxygen in the air, I cannot get my breath properly. I am panicking, I want to go and run out of the room, I want to hide in the loo and just cry because I feel pathetic that I cannot do this, yet there are people with walking sticks who are managing better than me. But none of them have sitting issues, I try to justify it to myself.
I find opening my eyes makes it more sane for me, but still I can only do a 1/4 of the exercises but very sadly. I then find out we are to do this every day at the clinic.
The teacher asked the group how they felt they got on. Everyone said “good” but I didn’t answer, I wanted to shout “I hate it and don’t want to do it again”. But I stayed quiet.
After this we had ‘relaxation’ time which involved lying down “yay” but deep muscle relaxation which involved tensing and relaxing muscles, and though normally I wouldn’t really find this an issue, after a whole afternoon of having taxing physical exercises it suddenly became an overwhelming experience. I found myself very teary, I was trying to hide it, a steady pathetic slow trickle of tears fell down my face in the semi-dark as I hoped the teacher would not notice.
I got up feeling crestfallen as how I would deal with this ‘thing’ that I would now make me dread going to the clinic instead of looking forward to it which I had been. I know somehow I will get over it, but just typing as I feel right now.
In my perfect world, I think it would have been good to have been pre-warned as to what was going to happen exactly and also to have had the physical stuff spread out with the learning inbetween, for me it was too much.
I then got ready to leave, my son had sent me text messages asking to have friends over. I felt like a bad mum because I didn’t want to come home with a bunch of teenage boys in the house, I had told my son that during this period things were to be quiet and I was angry at him having asked, then felt guilty for being a bad mum. I said no, but dad had already said yes. I got picked up and within a short period of time the flood gates opened, all the stress I had been holding in from the afternoon gushed out, but it felt good to cry to say how ‘shit’ I felt.
When I got home I went to bed, feeling like I had emotionally been through two rounds with Mike Tyson. My son realized that it might have been best for mummy to of arrived to an empty home except for him when he saw red rimmed eyes, I got a nice long cuddle and all is right with the world until tomorrow.
I think I need to talk to them, to say how I felt when I tried the exercise, how it is making me feel the prospect of doing this daily in this way and see if ‘they’ the experts can help with what I can only assume was the beginnings of a panic attack.
A quick post about my first day at the PMP as I will call it for now.
Pain Management Programme Clinic
I had a lot of reservations about how I would be out of my comfort zone somewhere else, surrounded by strangers but most of all how much sitting was involved.
Early on in the day the Therapists there told us there would be a lot of sitting involved and I muffled an audible sigh of dread as usually I feel incredibly awkward being the only one getting my mat out.
However I was not to fear. Everyone there was extremely nice and down to earth and I was free to walk around, sit or lie.
Pain Management Programme
There were six of us in total, one man included in that number. We did the usual introductions to each other of ourselves.
Then we went through the programme and expectations of it, both the course to us and between each other etc.
The day generally consists of one hour for lunch and two half hour breaks, I admit to doing a little bit of clock watching as it did definitely test my resolve standing for so long and the mat provided certainly wasn’t as comfortable as mine at home and I am used to moving around much more, but hard when you are in a one room environment to learn.
The other things we touched on was the fact that we would learn to have a different relationship with our pain, that in turn would enable us to have a different quality of life and reach goals and objectives perhaps otherwise deemed out of reach. It was about the psychology of pain, how it works, the circle that seems to be involved from the onset of pain, to the effect it has then accumulating to end up causing more pain.
Pain Management Programme
We also talked about goals and values. Most of us felt that we had changed from who we were to who we are now. Not in the essence of being totally different people but as if diluted if that makes sense. Ie we might still be caring, but the pain detracts from it, interrupts the way that we would like to be more wholly.
We finished off with a relaxation technique which started with deep breathing. When one is tense we tend to breathe from the chest only as if in a state of panic, whereas if relaxed we use the stomach and chest area. I was only using the chest so we spent some time trying to rectify that. Then we had a deep muscle relaxation session for 20 mins or so lying down on a mat, that was nice and I nearly dozed off lol.
That is all for now folks, I shall try to write about my journey each day but if not certainly regularly as it is quite exhausting being somewhere else all day but I am full of anticipation that I will learn lots of useful ways to help manage my days better and I am quite pleased that I did in fact one day, be it the first!!!!
You can find all my other Mindfulness Posts here:- Mindfulness
One Minute Meditation
Meditation
A lot of this book involves meditation.
With this in mind I thought I would share with you the One Minute Meditation suggested quite early on before starting the ‘actual course’ part of the book.
It says to be sitting down, however, with my pain issues I cannot do this, so I lie down and found it still as effective.
I am aware that one doesn’t really want to be reading something whilst trying to meditate, it sort of defeats the objective. With the book comes a CD which I can listen to, so if you wish to try this meditation, as you don’t have the disc you might want to read it a few times first before trying 🙂
Sit erect in a straight-backed chair. If possible, bring your back a little way from the rear of the chair so that your spine is self-supporting. Your feet can be flat on the floor. Close your eyes or lower your gaze.
Focus your attention on your breath as it flows in and out of your body. Stay in touch with the different sensations of each in-breath and each out-breath. Observe the breath without looking for anything special to happen. There is no need to alter your breathing in any way.
After a while your mind may wander. When yo notice this gently bring your attention back to your breath, without giving yourself a hard time – the act of realising that your mind has wandered and bringing your attention back without criticising yourself is central to the practice of mindfulness meditation.
Your mind may eventually become calm like a still pond — or it may not. Even if you get a sense of absolute stillness, it may only be fleeting. If you feel angry or exasperated, notice that this may be fleeting too. Whatever happens, just allow it to be as it is.
After a minute, let your eyes open and take in the room again.
Personally I think this is a great way to just ‘stop’ during the fast paced day or at a time you might be feeling some kind of negative emotion or even feeling pain. For me it has been a learning curve to just ‘stop’ in the day, to put in time to make sure I get ‘time’ to re-charge or pace or whatever I need to do, because one always puts these things on a back burner. This takes so little time, but it’s much like a power nap.
Thank you as always for reading, this excerpt was taken from Mindfulness, a practical guide to Finding Peace in a Frantic World by Mark Williams and Danny Pennman.
I have lagged behind in updating on this book a bit and now I am on to the ‘actual’ course bit. I am still loving it, perhaps finding it hard in places. It certainly takes practise but then if you are trying to learn a different way of ‘being’ it won’t happen in an instance right?
So here is a little bit more that caught my eye:
We try so hard to be happy that we end up missing the most important parts of our lives and destroying the very peace that we are seeking.
This is such a short piece but wow in my mind really punchy, kind of gets you right there if you sit long enough to really think about what the words are trying to tell us. I focus firstly on the word ‘trying’, shouldn’t happiness within come naturally? Missing parts of our lives I think is so common place, one year passes by the next. How many of you have a week go by and you think “wow where did that go?” Being wrapped up on so many things, trying to make us be a way we feel we should be. It’s much like when you go to the Doctors and get some pills, treating the symptoms rather than the cause. That is how I read this to be.
Thank you as always for reading, this excerpt was taken from Mindfulness, a practical guide to Finding Peace in a Frantic World by Mark Williams and Danny Pennman.
There are so many illness’s/disorders that are invisible. It poses an extra amount of issues borne by the person who has the invisible illness in how to deal with this socially. In socially I don’t just mean strangers, but if you experience what I do, it is friends, those close to you, loved ones, ones children.
It is hard for those having not experienced what we do to understand. It takes time and patience on both sides to try and educate. It takes a desire from others to want to learn and understand.
If they don’t then we just have to deal with the impact that has on us and try not to let it affect us too badly.
Share this graphic please, put it on facebook, twitter it, whatever, the more the merrier.
I try and scoop up the images that sometimes make it easier for others to understand ‘our’ lives.
I am thinking this isn’t a good idea to concentrate on what I am thinking. I am thinking “I cannot do this, I hate this, I am frightened, my chest is going to go in to a spasm”, then my stomach starts to feel like it is on fire, my chest starts to tighten up, I am getting hot and sweating and feel like their is no oxygen in the air, I cannot get my breath properly. I am panicking, I want to go and run out of the room, I want to hide in the loo and just cry because I feel pathetic that I cannot do this, yet there are people with walking sticks who are managing better than me. But none of them have sitting issues, I try to justify it to myself.
I then got ready to leave, my son had sent me text messages asking to have friends over. I felt like a bad mum because I didn’t want to come home with a bunch of teenage boys in the house, I had told my son that during this period things were to be quiet and I was angry at him having asked, then felt guilty for being a bad mum. I said no, but dad had already said yes. I got picked up and within a short period of time the flood gates opened, all the stress I had been holding in from the afternoon gushed out, but it felt good to cry to say how ‘shit’ I felt.
It's a lonely place 