The Course finished yesterday

I have not been here to post recently as I have been so wrapped up in various events happening to be and around me. The course finished yesterday. I think it was worth going as it has helped me put various coping strategies in place. Some of the things we covered  I am still coming to terms with,others I have started to implement. 

Various aspects of the course were pacing, goal setting, pain management, coping with flare-ups, communication, the role of exercise, acceptance and so forth. I learnt where my main stumbling blocks were....pacing, acceptance and communication...and how to work on them.

If I took one major thing away with me from this course, it is was to understand that I have the right to enjoy life as much as possible and that making myself go through daily pain just to teach, robs me of a life. This lesson learnt, last weekend I told my boss I was leaving at Christmas. Not sure what I expected her to say so took my husband up with me for moral support. Neither of us were prepared for the coldness of her response. All I got was a long list of what I had to do before I left. All things I am putting in place with out her "instructions".I also learnt that the children I teach that "are not any good" can transfer to other schools.How dare she! Just because a child is not going to be a shining star in the world of dance does not belittle them in any way and I am searching for another teacher who will love them and care for them whatever their abilities.

Before we left the hospital yesterday, the Occupational Therapist and the Pain Psychologist worked with us all to establish a goal to work on until we see them in January for individual reviews. The review will establish what help we need in the form of additional support, etc. I had trouble in sorting out a goal as I know the next few months will be very stressful , so the psychologist has set me the goal of finding five minutes a day where I can see if I can be at peace and do nothing, think nothing. In January she will help me set new goals "once the dust has settled" as she put it.

I was very reluctant to go on this course but I am so glad I did as it has helped enormously. I am not expecting it will miraculously give me an easy ride but it is the start of a new beginning

The course has started!

Having done the phone session which involved talking about my views on Fibro and what I hoped to achieve, goals I wanted to set, etc, I started the course properly on Tuesday.


After a' getting to know you' and ground rules  setting, we were invited to name all the symptoms we suffered from and their impact on our lives. I ended up making the group laugh after looking at the white board smothered with words with the comment that if we were animals the vet would probably put us to sleep. Naughty of me but looking at that board with no space left to write anything more on it was very depressing. Next task was to fill in our pain charts, physically abilities....Can you climb a flight of stairs...our choices ranged from one to ten, one being it was easy to climb the stairs, ten being extremely difficulty. I had to go for ten :-( .  Most of the questions were scored like that. Then we were told what subjects would be covered, exercise, sleep, relationships, employment, pain management, depression, and all that good stuff.




Our homework for the week to to try and absorb the information we took on board, write out our goals, however impossible they may be, what we think we are likely to achieve and what we are afraid of not achieving. 

I start next week :-)

Well my Pain management course starts next week. The first session is just feeling in questionnaires about pain, activity levels, etc so that the three main people running this course have a general overview of where I am at with things. Then there will be 10 weeks of 3 hour sessions. I will miss two as I shall be on holiday but the Pain Psychologist says the two I miss are exercise related where the physiotherapist is going to be encouraging people to exercise despite the pain. Apparently I need the reverse, I have to scale down my exercise. I am, I am told, very much in the minority here.


So I shall be talking about my PM sessions, what happens, etc.  It is all part of my journey. 

D'oh! Why ask if you don't pay attention to the answers?

I had been invited to the longer CPM course and accepted. They asked for my holiday dates and commitments, etc which I duly provided. Got my letter today saying they wanted me to attend a slightly different course more geared to my needs and you guessed it. It's when I am on holiday and on the days I said were the least convenient to me. Sigh! Just my luck.

Catch Up

I sort of got into a backlog here and haven't been keeping up.


Well, I got silly after being aggravated by some very stupid comments made by my Neurologist and I stopped taking some of my medication. When I told my GP what I had done, she asked why so I explained. She didn't say anything unprofessional about the man, just that other doctors were aware of the nature of that particular man and suggested I start taking the medication again so back on it now. I have to admit I do feel better being back on it. Lesson learned.. everyone can have an opinion but it doesn't mean that it is the right on for the circumstances.


I have cut another day from my teaching timetable. Apart from the fact that after charges for hall rent, I was teaching for nothing, I am too tired to continue this pace. This way , I hope to be able to teach for longer.


Had my orthotics temporarily tweaked on Wednesday and they will do a permanent job next month if the adjustments have helped. They seem to be working so hopefully it will sort out a few minor problems. Onwards and upwards!

Foundation Course in Pain Management

I did my Foundation Course in Pain Management on Thursday. It was a three hour session run by a senior Physiotherapist and a senior Occupational Therapist. It was very interesting. First they explained how the pain system works, what is acute pain, what is chronic pain, etc and what it's effects on people physically and emotionally can be. They also gave us loads of handouts to take away with us as there was so much info they said we wouldn't remember it all.


At the end of our session, some of us were given brown envelopes. Apparently the Clinical psychologist who had done the initial assessment as to whom the Foundation Course would suit also recommended those she felt would benefit from a longer course. I was one selected so in my envelope was a rundown of what the longer course covered and an opt-in form if i wanted to do it. I decided I would.


The next course covers pacing, goal setting, medication, relaxation, stress control and exercise plus ways of accomplishing tasks that give us difficulty. It is to be run, in the main, by the two ladies who presented the Foundation course. I really took to them as they were just so encouraging and humorous.


There is a wait for this course  so what this space.

Yippee! They all passed!

All my clever children have passed their ballet Exams.

Tai Chi, and all.

I had my second Tai Chi class today and really enjoyed it. I learnt a very short 'block' and found that it was really relaxing , almost mindless, just focusing on the movements. Instructor is away for two weeks and I will be happy to return.


Otherwise it hasn't been the best of weeks. I started some new medication on Friday and while it helps, the side effects are not nice. Apparently you either tolerate this or not. I shall give it a fair trial in the hope the side effects settle down.


I have a new toy! A hand operated Singer sewing machine. My electric one just ran away with me but this one is just like I remember from school. Feel much more like getting back into making things now I control the machine and not it controlling me.


The garden is looking better too. The old man has finally removed the fishing weights he had dumped there and I have been getting things straight again. I planted seeds for dwarf runner beans and courgettes. My normal runner beans are looking good and my carrots are beginning to look like they are coming up too. Don't think I will grow strawberries this year, to much effort for a small return. I plan to get going in earnest at the end of the week when all chances of frost will be past.

All over bar the shouting.. now we wait!

The day actually went very smoothly in terms of getting the children ready. True to form , things in the studio went pear-shaped from time to time. Children who are normally OK got bad nerves, others improved under pressure.  Our examiner was just gorgeous , so kind and very good when it came to my SEN child even though headquarters had not sent her the paperwork. probably due to the fact we had to change examiners at a week's notice as our lovely Mrs prime was ill. :-(


I am paying for it today in pain and stiffness. One good thing was my fibre fog didn't cut in until towards the end of the day . That had to be a bonus.


Now we wait for the results.

Ballet exams, Tai Chi and splints

My children are taking their ballet exams on Tuesday so yesterday was the piano rehearsal. One child forgot to come, one teacher over ran her time so made everything late for me. I had a bet with my husband that this would be the case. He reckoned it was a no contest as he agreed with me.


Standing for so long, getting up and down seeing to shoes, sewing ribbons on, getting the mirrors moved out of the studio proved to be just a little bit too much so today has been a non day. I have been productive though. I have printed out colouring sheets for the little ones so they can have something to do while they wait their turn to go in. I ought to be doing the running orders for the class exams but that can wait until tomorrow. I have to go on a crayon hunt first :-)


I made enquiries about Tai Chi at the NFC near me. I think it is something I would like to try. My balance has gone, along with my muscle strength so this might be the gentle exercise the Pain Management Team have suggested. Classes are Tuesdays afternoons and Saturday mornings. I'm aiming for the Tuesday class but it will have to wait because of the exams.


I am getting on quite well with my wrist splints, they really do help enormously. I am a bit more fumble with my fingers when I am wearing them but, like everything,it just takes getting used to. I had to laugh when my boss spotted them. She told me that SHE had a splint for her ankle and that a orthopaedic doctor has prescribed HERS. Just quietly told her that mine had been prescribed and fitted at the hospital too and weren't they helpful things to have. She won't change. I think , mainly, it is my fault because I have put up her way of treating me for so many years. It was actually quite a shock to find out from teacher at another ballet school that they were all aware of how I was treated by her yet it never registered with me until a few years ago.


Time to get the dining table sorted for the evening meal. Roast Pork, yummy.

Wrist Splints excite me!

Well that certainly sounds a bit naughty but the truth is far more boring. Who would have believed I could get excited about having wrist splints fitted but I have. The sheer joy of being able to hold a mug of tea with one hand has really made me happy. Well, they do say little things please little minds :-).


Not much else to excite me otherwise. Work is a struggle and I have not told my boss what is going on with me. I know she will only dismiss it as she does anything that isn't to do with her. She is still having little digs at me because I have said I won't climb up into the prop loft for her. I did suggest that one of the younger teachers could do it for her and got the reply " no, she isn't fit enough" . Not fit enough? For goodness sake, the girl is an aerobics instructor as well as being a ballet/modern teacher. I love my boss to bits but I have just come to the end of feeling up to putting up with her. I just can't struggle anymore.


Been talking to my husband about what choices are open to me and, much to my surprise, he is all for me cutting my workload even more and doing more with my craft work. Half of me would love to do that, all of me knows it's a good decision but there is just that bit of me tucked away that doesn't want to admit that I need to make these changes. Maybe I will have a better understanding of myself when I have done the FC in Pain Management. We'll see.

Pai,Pain, Go away!

Today I realised just how much the pain is ruling my life. I have the children I teach taking their ballet exams in just over a week's time and I had to push myself to teach today. My body is screaming at me and I wasn't able to give in like I wanted to.
I am going to have to make some tough choices soon, ones I don't want to make but have to. The children deserve a teacher who can give them 100% all the time. And I need to have a life where I actually look forward to living, not dreading it.


But what is there to replace the joy ballet gives me. The joy of moving. I am so sad.

Unrealistic goals

Well, having seen the Clinical Psychologist and received a copy of the letter she has sent to the pain management team ( another psychologist,a physiotherapist and an occupational therapist) and also to my GP, of what she felt came from our appointment together. Basically my goal of wanting to "get rid of the pain" and "return to normal again" is very unrealistic. I think I have finally started to come around to that way of thinking having had a bit of an epiphany following my talk with Dr.T .


How do I feel about this? Sad, lost, and a whole set of other emotions. Dance, especially Ballet, has been such a major part of my life. Now, instead of having the joy of movement, it brings pain. I have not been enjoying my life as I have been too wrapped up in trying to find answers and 'cures' so that I could continue the same path. But the stark reality is that I can't.


I have agreed to do the Foundation Course, a one session introduction to a pain management approach. I was initially doubtful about it but am going for it and I have also come to think I will continue onto the Pain Management Programme (PMP).Plenty of thinking time for me as it is about a two month wait for the FC and nine months for the PMP. 


I accept now that this is the best course of action and will be of the most benefit to me. Maybe it will also help me channel myself in new directions. I shall face this with hope.

Fibrofog

This is so scary and I absolutely hate it. Someone please tell me it will go away! All day I have been struggling to explain things, find the right words or even maintain a conversation. I just can't focus and the words just swirl around in my head and I can't grasp them. How do you deal with this?

I need to learn to pace!

I really need to pace myself and learn to do it really soon. Yesterday I taught all morning then, in the afternoon, decided to spring clean the bedroom. I got so much done, furniture all pulled out, paintwork washed down,mattress turned, etc. Then I sat down and the pain really hit me. I went to bed in pain and didn't sleep. I had my TENS machine working all night and could have cried with the pain. Today has continued the same way :-(


One thing the psychologist said to me was why did I feel that I had to keep going until I was in pain.  I think it is because I feel useless now, I am trying to deny having Fibromyalgia. If I don't acknowledge it, then I don't have it. Does that make sense? I still feel lost and isolated. 


I am so frustrated by my hubby's jokes. He "tries to make light of it" as he puts it. What he thinks is funny is actually upsetting me intensely. And he just doesn't understand how frustrating and scary the cognitive problems are. How can you get a partner to understand you need support not stupid jokes the whole time?

The Pain Psychologist

Yesterday was my appointment with the pain Psychologist. Having had a bad experience with the Sports Psychologist, I was wary. Very wary. Dr T was very pleasant and started by asking me if I understood her function in my treatment. When I said that I didn't she explained that she is part of the pain management team which was made up of the pain management doctor, specialist nurse, physiotherapist, occupational therapist, herself and me.


 "I am not going to try and get into your head. That is not my job. But chronic pain isn't going to go away and it can have an emotional as well as physical impact" We talked about my support system and home and work which is, unfortunately non-existent. Both Hubby and my boss tend to tell me they understand because their knee or wrist hurts. I am expected to just get on with it. That impacts on me. That I don't understand that I need to pace myself. And had I thought about not being able to continue doing the job I do, finding something else that is less tiring on my body. We covered things from employment to relaxation.


She is going to consider what we talked about then I shall be sent another appointment to be assessed by the Physiotherapist and Occupational Therapist and from there onto the pain management Foundation course. She did say that was a rather grand name for a group where we are taught ways to lessen the strain on our bodies, learning several ways to relax when the pain is too much, to pace ourselves and also to make sure our medications are providing the best level pain control for us. 


I did like the fact that I had choices here. That if I wasn't in the right place mentally to accept this course that I could do it at a later date. Or if I didn't think the approach was right for me, there were other options. I am going to give it a try. If it works for me, brilliant! If it doesn't, then at least I know I have tried it.


The only real downer was when I got home and told hubby all about it, his response was "so your appointment was just a load of B*&& S%!£. :-( . As usual, he isn't interested in it helping me. And as usual, I felt devalued as a person.

Learning, learning.

There seems to be so much information about Fibromyalgia and none of it consistent.  One book says it can be cured, another that you live with it.  That, in a way, you actually have to make friends with it.  I view it as the enemy.  It has stolen from me. My career was also my hobby and I am just hanging on by my fingertips. I can feel myself slipping.


I downloaded this free book on Practical Living with Fibromyalgia and it has been both interesting and helpful. I understand about "fibrofog" a bit better now and have also reached the realisation that the effects of fibrofog are more wide ranging than I thought. I thought it was just about finding it hard to find the right word in conversation, of being less able to remember and focus. Now I find that it can affect the ability to understand what people are saying or have written. Then this has got me wondering if I really misunderstood what a friend wrote to me or did I get it right. Either way, it has made for an uncomfortable situation. One that has affected my depression even more. :-(


Tomorrow is my appointment with the Pain Psychologist and I am getting increasingly anxious about it. A wise friend suggested I go in with an open mind that they may actually be able to help me and, if they can't, then I haven't lost anything in the trying. I think I am afraid that this person is going to try and somehow get into my head like the Sports Psychologist did. Churn up stuff that was so unrelated and leave me with no way of dealing with it. I suppose I shall have to give it a try.

I'M Lost !

A friend posted this on a forum I belong to and it made me smile.


"I'm Lost. I've Gone to look for myself. If I should return before I get back, PLEASE ask me to wait."


I thought this was brilliant.

I have lost myself. Who am I now?

I decided to release all my negative feelings to the Universe in the hopes that it will help me work towards acceptance. The moment I realised that the then unidentified Fibromyalgia was affecting my dancing, I started to slide down into depression. And the less I was able to dance, the more the depression deepened. I felt I had lost myself and all that made me "me".


Who am I now ? I used to be a ballet dancer. I have danced for all of my life and there is nothing in place to follow it. Whatever life's problems were, dancing was my release, my safe place. Now I am still bombarded by problems but there is nothing to stop them, no safe place to go to decompress. Dance was the TENS machine in my life. Now there is nothing.


I know I am blessed with family but even then, this Fibro butts in, I can't play with the children like I used to do. I can't even go for a walk without exhaustion coming, and pain. And talking, when you have the words swirling around in your head but can't pluck out the word you need. I feel stupid and useless. And lost.

Nerve Pain :-(

Nerve Pain. It is really getting me down. All the medication I take helps with the day to day pain fine but the nerve pain is unending. I take 20mg amitriptylene at night but my legs and feet, particularly my right side seems in a constant state of feeling it is about to get cramp. My podiatrist comments on how tight my calf muscles are yet I do exercises that stretch those muscles every day. I wake up in the morning and I am like an old lady, the way I move.


How do you learn to focus on other things when even when you are sewing or reading or teaching, the pain pushes to the front of your mind and ends up distracting you from what you are trying to concentrate on.


I know, from what I have read, that learning to alter the focus helps us cope with the pain and sensations we feel. It will help block them out.


I have my first appointment with the Pain Management Psychologist on Friday. Not actually looking forward to it having had bad experiences with the Sports Psychologist. All she did was make me feel even worse until I felt like crying the whole time. Don't want to go through this again with someone else. They delve around in your mind and stir up things that are best left and leave you with things and no way of dealing with them. I will give it a try but am so wary I think it might be an uphill job and more of a battle than I need to face.

The Diagnosis

I have been struggling for years with painful feet, burning muscles, sore joints. Then other things started to add themselves in. I dropped things unexpectedly, I fell, I  was permanently exhausted. I was sent from rheumatology to orthopaedics, to podiatry, back to rheumatology, back to orthopaedics, to podiatry, to physiotherapy, to neurology, to pain management clinic. And finally, after going through all my symptoms, Dr L announced " I am sure you have Fibromyalgia". I was handed an NHS leaflet on the subject, told I would be referred to the Pain Management Psychologist and would be sent an appointment. An that was that.


Everyone has an opinion about Fibromyalgia. I have even been told that "oh, that's the fashionable illness to have right now. Doctors just say it to fob patients off when they don't think anything other than a few aches and pains is all the person has"! Or the" oh yes, I ache a lot too, especially at my age".


I know it is not a fatal illness but the 'fibre fog' scares me. And I see my physical fitness declining rapidly. A flight up the stairs and I have to stop half way, a short walk exhausts me, the depression pulls me down into a dark place I can't seem to get out of. I am a ballet dancer who can no longer dance and I have lost who I am as a result of this.


Exercise gently, it may take a year before I get a slight improvement. But I need to exercise to do my job. Nobody can tell me how do I cope with that?


Fibromyalgia has become my enemy. It is an enemy who hides because it isn't visible to the human eye. They say " Know thy Enemy" so I I shall try to do that.