Time has flown by…..

Time has really flown by me and I haven't been here to blog. I decided I had better get back into action.

Well, we have just been through the 1st anniversary of mum's passing and we managed to cope relatively well considering. Lots has happen this last year. In March we went to visit my son and his family as dad was keen to go to see his grandson and great grandsons.. While we were there , my son was promoted to Sergeant and dad was invited to pin his badge on which he did. My son also took him on a short tour of the jail. As my son was on vacation, we went to California to see other family members and we took dad to Disney in California and he bravely tried nearly all the rides.


 This Christmas we went over to Canada as he wanted to visit with my sister , his granddaughter and his great granddaughter. He had a fabulous time despite being knocked over at Heathrow airport on the outward journey. We didn't get out much due to some very cold and slippery weather but we enjoyed ourselves and as it was our first Christmas without mum, it gave dad something to focus on.

Much as I try not to let the fibromyalgia rule my life, it has it's own way of twisting in to everything. I have done some one to one work with the clinical psychologist at the pain clinic which was both painful and very revealing. I don't know who I am any more. I don't see myself as worthwhile or of use to anyone. I shall need to work on accepting the new me and accepting that it is ok to be the new me. That will be an uphill battle.

I shall probably blog about it more later but my mind is still processing stuff we covered and it's a lot to get my head around.

I have promised myself a return to 'snail mail" . The art of letter writing seems to be vanishing and I have decided that is sad so am making a stand to write more letters, even if I have to type them! The intent will still be the same.

Tired of trying to be "Normal"

I am so tired of trying to be normal, the old normal. I so want to be like I used to be. Fit, able to dance. Even if only just to dance for my own pleasure would be nice. Instead I can't even do a pile. I can get down but my legs don't have the strength to get me back up again. I am working on regaining some level of fitness but the results are so slow, I don't even think anything is improving :-( .

I had my hospital follow up  recently. A whole load of questionnaires. Tick this box if you can do x,w, z. Rate your abilities or pain on a scale of one to ten. Have you accomplished your goals? No :-( . 

Contacted a few teachers on FB and now feel totally invisible as they talk to each other but ignore me. So that is me now......invisible.

Been a few months

It's been a few months since I have come here to post. I feel like I have managed to get absolutely nowhere with taming the dragon of Fibromyalgia, neither have I learnt to dance with the dragon yet.

I have found two new support forums, one in the UK and one in the USA. Both are very different and both and so much information and support available if only I could get my head around it all. I think part of the problem is that I have not been able to settle into a routine since mum passed away although there is a glimmer of light. I need routine and purpose and have yet to find it. So far I can't settle to the sewing although when I do sit down and create something, I enjoy doing it. But it always seems like a last resort.

My lovely GP retired last year and I had been resisting seeing her replacement. It got forced on me last week as my blood pressure, despite medication, is far too high so the nurse ratted on me to the GP who called me in. I suppose she is OK. I did ask her what she felt about fibre as some doctors believe it is all in the mind.....I wish !. She responded by saying she believes it when people tell her they are in pain. It's an answer but not an answer, so I am still in the dark.

Not seen anyone from the studio since before Christmas. I am becoming quite the recluse and I actually like it that way. I have started swimming twice a week. And I hula hoop for my non impact aerobic exercise . How to feel exhausted in two minutes.

I STILL haven't set my SMART goals yet and I have my follow up appointment with the Pain Clinic on Thursday. I haven't even done any of my "homework" either. Do I get detention, I wonder, and have to stay after class.

Lost my mum

I lost my mum on January 30th. She had fallen and broken her hip for the second time at the start of January, and after nearly three weeks in hospital, was due to come home. Then it all went pear shaped . It seems the dementia was very advanced and her hospital stay excellerated it. She and my dad had been married for 71 years and his heart is broken.

We were all able to be with her as she passed into spirit and were holding her hands. It was very peaceful. The nurses and doctors treated her with great respect and dignity to the end. Their compassion and kindness to us all, especially our dad, was wonderful

Update

I didn't realise how long it has been since I last blogged so I think this is well and truly due for an update.


I finished teaching on the 9th December and my , now ex, boss made it as difficult as she possibly could. Even now I have a sneaky feeling she will try and keep me in her clutches as she said before Christmas that as I would have more free time, I could do x,y and Z for her as she didn't want to ask her husband to do it. I appreciate that he has had a stroke and though recovered, still isn't able to cope with much. But why should I be doing her work when there are three other, younger teachers available?

I must say I am quite depressed at the moment. I had it in my head that once I had stopped work, a miracle would happen and I'd feel so much better. Wrong ! Mentally I am struggling with not teaching and then things started going pear shaped.

Christmas my parents came for the day, along with two friends. It was lovely that mum and dad could make it but a nightmare getting mum up and down our outside flight of steps, to the bathroom , etc. But that was minor to the next event. Earlier in the month mum fell in her house and broke the same hip she broke January 2011. This was when we realised she had dementia. Fast forward to this year, where things are much worse and her behaviour more challenging. She doesn't believe she has broken her hip, thinks my 90 year old dad is having an affair with the Staff nurse looking after her. The MHT have tried to assess her so that we can get the right level of care set up for her but she won't let them. Visiting is a horrible experience as she can't or won't have a conversation, ignores dad and tells us things we know have never happened except in her own mind. Dementia is a cruel illness.

I had my own assessment with the Pain Psychologist and the Occupational Therapist. My 20 minutes appointment stretched into a 40 minute one which I cried most of the way through as I am not coping. Trying to stay normal for my dad as he is staying with us while mum is in hospital but just could not maintain it in front of those two very kind ladies. Apparently I have gone backwards in managing my condition . Not surprising really :-(.

And my BP is soaring, despite 3 lots of medication. I know it is stress but I just can't seem to stay calm inside. The nurse wanted me to wear a 24 hour monitor but I refused as I just could not cope with that on top of everything at present. Not looking forward to my Wednesday appointment. It add the cherry on top, I have a new GP who I have never seen so don't  even know if she is fibre friendly or whether she is one of the doctors who think fibre patients are lazy shirkers and that fibre does not exist.

With luck I will keep my blog up to date in future.

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.