Feeing Heard

Today I was feeling better than I had in a few weeks. I saw the physiotherapist yesterday and as always I felt so much better after our consultation. She has this wonderful skill of normalising what my body is doing without dismissing my concern. Not only this she is thoroughly conversant with CRPS and it inherent difficulties. One of my concerns which I discussed with her yesterday was my difficulty in walking and the resultant pain. We worked through a range of activities and she looked at the way in which I sat and stood. my technique is causing pain other than CRPS in my body. I think the CRPS causes me to sit and stand and walk like this. I think I am particularly protective of my limbs and this results in causing further damage.

I have a range of activities to do and I have an appointment to see her in two weeks. We did spend some time discussing creative processes after I had given her a copy of my blog about feeling cheated. There was a challenged issued that I perhaps try and draw how I see the pain. I of course do not have any talent in this regard but accept the challenge I did. Very clever of her to make it a challenge.

I had a lovely afternoon sitting in the sun in the garden with my friend L. this afternoon. As always we had a good laugh about several things. We rang an old friend in Melbourne and the beginning of the call was almost bordering on hilarious. She did not know who it was that was calling her or who she was speaking to and she had quite a funny conversation before she was able to work it out. It was joyous to speak with her and listen to her wisdom. One of the things she said that resonated with me was don’t put a full stop where God has only put a comma. I guess there are times when I do put the full stop in when I am feeling particularly sorry for myself but I always seems to remember that life will go on. She also said God sometimes moves mountains but he does not always put them where we would like them. Wise words from a very wise woman

At around 5.00 pm the pain began to escalate once again. My feet and legs and my left arm are just on fire. One of the characteristics of CRPS is its unpredictable nature. As I write this the pain is up around 8/10 so it is not auguring well for a restful night.

Feeling Defeated

Last evening I went to bed at 9.00 because I could not sit on the lounge any longer such was the intensity of the pain. Those of you who have CRPS will know the feeling – nothing you do makes you comfortable and you cannot get into a comfortable position no matter what you do. So I took my meds and went to bed. By 11.00pm I knew that was not the answer either because I could not get comfortable no matter what I tried or how I adjusted the bed. Not only was the weight of the doona unbearable but the pressure of my body on the bed was insufferable.

I sat in the recliner surrounded by many cushions and pillows knowing it is going to be a long night ahead. I made myself a drink of hot milk in the hope that would lull me into slumber together with the many potions and portions I have consumed since 9.00pm.

I found it hard to type and see that I am making lots of mistakes and I am having to go back and make lots of corrections. Maybe its to do with my mindset of feeling cheated yesterday.

I read a post in one of the Facebook groups I belong to which had been posted by a woman who has CRPS and we were discussing words. She said that she was looking for words she could use that put a more positive spin on the condition in the hope of improving her mindset. What a great idea I thought. Many years ago a young woman I worked with used to call me the wordsmith, but this evening coming up with the positive words are just not possible.

I have always loved words both written and spoken. If I don’t know the meaning of a particular word I look it up in the dictionary, finding out its meaning and derivation. Yes I still use the dictionary and I have several and I would be lost without them.

When I had a telehealth appointment with my pain specialist a couple of weeks ago I assured him I was in a really good “headspace” about the CRPS and that I would go and see the psychologist again should that change. I told the PS that I was in a place of acceptance of the condition and that “it is what it is” I think that may be changing however I will wait a couple of days and see what happens but it may be time for another consultation.

So yesterday I was feeling cheated – cheated by the CRPS and what it has done to my life. Today I am feeling defeated. I feel like I have had enough and the pain is victorious. I cannot allow it to win the war but for now “it is what it is” and it is beyond endurable………but endure I shall because when you have CRPS thats what you do.

FEELING CHEATED

 

Yesterday I was feeling particularly cheated.  I think that is the word I am looking for.  We went for a drive up around Newcastle Beach via Honeysuckle. I watched all the people who were out walking: walking with their friends, walking with their animals, walking hand in hand with their partners.  It was a cold and windy day. The sun was shining. People were either rugged up against the chill or were in lightweight exercise gear.  We passed several runners.  We came around King Edward Park and saw many family groups picnicking.  We then came upon the Memorial Drive Walkway which was as usual overrun with walkers and joggers.  

You may be thinking what a wonderful day.   In one sense it was.  But I  feel cheated.  I was diagnosed with CRPS following a Total Knee Replacement in 2010.  Things went well initially but after about three weeks the recovery went downhill.  I had the Knee replacement to help improve my mobility but in a sense it took it from me.  Initially I could barely walk very far at all.  I could not stand, on some days, the feel of fabric on my leg and could not wear a shoe.  I have worked really hard with the help of therapists to over come these issues but walking is still a huge difficulty.  I can go for a walk but get to a certain point that is a point of no return.  Therapists would talk to me about pacing but there seems to be, in my case, no common time about when this point of no return will occur,  On one day it might be after 1/2 an hour, on another day it might be after a few steps.  What happens is the pain ramps up to the degree where I find it really difficult, in fact nigh on impossible, to weight bear.  My gait is also affected.  Again there is not rhyme or reason around this one either.  One day I might be OK on another I walk like I am very drunk.  On these days I find that falling is higher on the agenda then on days when my gait is fairly normal.  I have a fear of falling primarily because I have a fear of breaking something and find it really difficult to get up from a fall. I also struggle with where my feet are in relation to the space around me.  This contributes to the difficulty of a walk.  The pain I ALWAYS experience during and a walk makes me somewhat reluctant to start out.  Some days my pain might be sitting at around 4 out of 10 so I often think to myself I can do this today and away I go.  During the walk at sometime the pain will ramp up to 8 out of 10 or even higher.  It then becomes necessary to take the really strong painkillers which then preclude me driving should that be necessary.  However when the pain is at that level driving is pretty much impossible anyway.  

Additionally I find it unbearable to be out in the wind. Cold wind ramps up the pain. I am effected not only by the cold but the feeling of the wind on my skin can be unbearable

So I feel cheated.  I feel duped.  My life has taken a turn I did not want it to take.  When I had the Knee Replacement I was attending sessions at the gym and was pretty fit.  I was working in a job I loved with people I respected.  I was not ready to retire but I was left in the situation of not having any choice in this.  My plans to travel overseas have been thwarted by these limitations.  Day to day life in retirement is very different to how I envisaged it would be.  

I have to make the best of the situation and I think I do.  It is not fair on Terry who has to do so much for me and to keep the house functioning.  I am so blessed that he is so understanding and supportive. 

The first day of school

Today was an important day in our family.  My great granddaughter Sarah started Kindergarten.  You might ask why the is so important and so special. You see Sarah was born at 27 weeks gestation and at birth and weighed just under 800gms.  She was such a tiny little thing that fitted into the palm of your hand. 

On the day that she was born while I was very elated that my oldest grandchild was now a mother, I stood by the humicrib and cried.  My granddaughter asked her mother why grandmother was crying.  Her mother said you know grandmother she cries when she is happy and cries when she is sad.  I was actually crying because I did not hold much hope for this tiny scrap of a little girl.   Fifteen weeks later Sarah came home from hospital and has gone from strength to strength.  I am not pretending that it has been easy for my granddaughter but she too has gone from strength to strength as a mother.  Sarah now has a brother and in order to delay an early arrival in this pregnancy my granddaughter spent seven weeks in hospital.

Sarah has bought much joy into the family and her birth gave us five generations of females. My Mum who is almost 95 experiences great joy when her children, grand children and great grandchildren visit her.   Today 1st February is Mum and Dad’s wedding anniversary.  Had Dad been alive the would have been married for 73 years.

At the end of her first day at school Sarah tells me she had a good day.  She says she has a lovely teacher and likes all the kids in her class  but that one of the girls is mean. She told me she got to colour in and she is going to go back on Monday. 

A CRPS UPDATE

One of the things that can happen when you have Complex Regional Pain is the presence of paraesthesia. This is a term used to reflect a perception of abnormal sensation, including feelings of pins and needles, tingling, pricking or a feeling as if ants are crawling over/under the skin or of insects biting the skin.

I have not experienced this for some time however it has been one of the things that has interrupted my sleep of late. Tonight the sensation is particularly severe and I have the sensation of spiders biting my legs and arms. I have not found the technical term for this, however, when it is the feeling of ants the sensation is called formication. I guess the feeling is a more severe sensation than formication and when coupled with the other symptoms it is particularly troublesome.

I have described the sensation in my legs and arms previously as like having my limbs filled with molten metal. For over a week now I would describe it as standing in freezing cold, icy water and the water being so cold that it gives the sensation of burning. When this is the case it also results in a sensation that I describe “as my legs not working”. To explain this more accurately, when I go to walk it is almost as if my legs have a mind of their own and I really have to work at getting them to move in a direction vaguely resembling a normal gait.

I am sure that the weather has an impact on the condition and the current heat and humidity is playing havoc. The current level of my pain tonight after taking all my regular meds and the meds for breakthrough pain, is 9/10. Some would say that when the pain reaches this level then it is time to seek some medical attention by perhaps visiting the ED at the local hospital. This is actually an exercise in futility as the ED is not equipped to handle chronic pain and their exists a view that by seeking this help that you are drug seeking. On one occasion when I could not cope, some time ago, when I got to ED, only one of the doctors knew anything about CRPS. He said as I was the person who knew most about it would I mind talking to staff about the condition. I was in no fit state to talk to anyone, so declined.

It has been 9 and 1/2 years since I had my left knee replacement and started on this journey with CRPS. As you may remember it started in my left leg, spread to my left arm, then my right leg and now my right arm. There are occasions when I feel the pain and have the sensations in the left side of my face and tongue. I wish I knew then what I now know about the condition. If that were the case I would have found a specialist who had a thorough understanding and a compassionate approach to CRPS sooner, I would not have consented to some of the surgeries that have been performed with the purpose of managing the pain.

One of the things that I find helpful in “getting through” times such as these is mindfulness. Mindfulness is the informal act that aims to get you focussing your mind on the present; acknowledging and accepting what’s going on inside and outside your body. It brings you back into the present, allows you to observe your emotions and feelings without letting them control you. The theory is that this will allow you to better manage your thoughts. Initially I was really good at catastrophizing. By this I mean that often viewed the situation as much worse or with more dire outcomes than were relevant. This distortion prompted me to jump to the worst possible conclusion after a flare of the pain would occur. I was caught in this thinking that the pain would get worse and I would not be able to cope and what would I do when I was in this not coping phase. Since mastering the technique of mindfulness I am less likely to fall prey to this distorted thinking.

I put up a social media post yesterday talking about my sleep disturbances and people responded supportively and positively. It was suggested that i approach my doctor for some sleeping pills. I have done lots of work on sleep hygiene and insomnia and I have spoken at length to both my GP and Pain Specialist about the place of additional meds such as sleepers in all of this. I do have something which I can and do on occasion take however when things are at the level that they are tonight they are somewhat useless.

So i sit here watching Foxtel, struggling to get Netflix to work, writing to take my mind off things

48 Years ago

t was a Friday night in Newcastle. Two young people committed to each other. This was happening on the Friday night and not the Saturday afternoon as was the custom for weddings because it was less expensive to have a wedding reception on Friday. Many telegrams arrived through the day wishing the young couple happiness and longevity. when I was telling my granddaughters about this part of the day they looked at me blankly having no idea what a telegram was. When I told them their grandfather had been a telegram boy this was a source of great hilarity to a generation used to instant communication
 
The afternoon was very warm and as six o’clock approached the temperature like the hopes and dreams of the young couple soared. The bride’s brother Geoff, was best man and the bride’s sisters were bridesmaids (Rosemary Tytherleigh Ruth Baker Jennings and Carmel Jennings). The bridesmaids wore hot pink frocks made by the bride’s mother.
 
Relatives and friends gathered in the Catholic Church at Broadmeadow where the bride and her parents had received all her sacraments and was a special place to her family. The groom’s family was a little ambivalent towards the venue to say the least. The young Italian priest who had made friends with the young couple performed the ceremony in a traditional nuptial mass.
 
After the ceremony they enjoyed the “reception” at the Church of England hall in Mayfield where the enterprising ladies of that parish catered wedding receptions and parties to boost the coffers of the church.
 
The brides grandfather sang “I Love you Truely” and there was a sit down traditional baked dinner and desert together with dancing to a three piece band. Many photos were taken many of which were candid shots very different to the staged photos of today.
 
When it was time to leave the bride changed into the traditional “going away outfit complete with matching hat and gloves. The traditional “goodbye circle” wished the young couple well on their way. The following morning the young couple journeyed to Surfers Paradise for a weeks holiday in the sun. However this was really not to be as it rained every day till Thursday the final day of the adventure when the bride got so badly sunburnt that it was unsure how she would travel home in the FB Holden, the pride and joy of the new groom.
 
I was the young bride and the young groom was Terry. 48 years later we are still weathering the storms of family life. There have been many happy and joyous events and occasions and equally many occasions of sadness.
 
When I say 48 years it seems like such a long time and I know that it really is but when I think about that hot and humid Friday evening it seems like yesterday. There has been, like in all marriages, much water under the bridge in that time, occasions where we have both wondered “how the hell did that happen” but through it all the seeds of love planted on that day has grown and flourished. We thought at the time that we could not be any more “in love” but we wrong about that as we were about many other things over the years.
 
The marriage has given us four children, eight grand children and two great grand children. we have been surrounded by many people who love us and have supported us along the way. I could not have asked for a better husband. In the lottery of life we found our soul mates. In the past eight years since I have debilitating pain Terry was done all sorts of things for me with very little protest. A testament to the man he is.
 
Happy Anniversary Terry love you to the moon and back.

Four Corners Follow-up

Last night I watched the second instalment of the Four Corners investigation into Nursing Homes.  As many of you would be aware my mother is resident in XYZ Nursing Home here in Newcastle.  The program was very difficult to watch not just because Mum is a user of such a service but the treatment some of these elderly residents received beggars belief.   

I asked myself after watching the first episode a week ago how I could be sure that this was not happening to Mum and the residents with whom she now resides.  It was an easy question for me to answer as when I visit the home, and I do this very regularly, I observe the manner in which the staff interact with the residents as well as pay special attention to how Mum responds.   Staff  are caring and compassionate in their interactions with the residents and can be seen doing the little extras that make a difference.    Of course there are times when they are over-stretched or very busy but this is generally explained to the resident if they have the cognitive skill to understand the concept and after prioritising tasks the request, whatever that may be, is responded too.

One issue that was raised in the Four Corners program was the level of staffing in nursing homes. It was proffered as an explanation by some that staff numbers had been cut in order to provide a greater level of profit to the home owners/operators.  I am not going to pretend that there are never staffing issues where Mum resides. There are times when staff  phone in ill, need to go home because they are unwell or have family commitments, sometimes it is easy to find a replacement for the situation and other times not.  On the occasions when it is not possible to find a replacement the staff seem to work together to ensure that all necessary tasks and duties are undertaken and there does not appear to be an impact on resident care.    

The program also spoke about lack of staff training for those entering the profession.  In the six years Mum has been in care I have seen many new starters come on board.  I have never asked about their qualifications or their level of training but in my observations it did not appear to be in any way lacking.  At XYZ the new staff are on some level mentored by the long standing staff.  Some of the staff have been at XYZ for 20 years plus, and I think this in itself speaks volumes about the organisation.   I am also aware that there is a program of staff development available. 

I have also been asked today what would I do if there was an issue where Mum was in care.  The answer to that is somewhat easy to answer as their was an issue some months ago and the management responded appropriately, promptly and professionally.  

Having said that I would like to just make a comment on the leadership team at XYZ.  The culture of the place is one of respect and positivity and they enhance this by example and professional practice.  They are welcoming in their approach to residents and encourage families to play an active role in the placement and on-going care of their loved one. 

How to Book Club with a Flare

 

As many of you who know would attest there is not too much that I opt out of because of the CRPS.  My close friend L and C would probably not agree with that as because I do more with these two great women they are often left at a loose end.  But generally if something is planned I can make an appearance and get through an event unless it involves lots of travel, loud noise and lots of standing. 

Some two years ago because I had a view that my social life was flagging I joined the local PROBUS Club.   The people involved in Probus might also say that CRPS has an impact because of those reasons outlined earlier.  One of the off-shoots of Probus is being part of a pretty awesome book club.  Now you all know about my love of reading and this adventure has been really good for me as it has exposed me to reading books I would not read or in some cases even consider.   At the end of last year we decided that we would all choose a genre at the meeting and  when it was our turn to host the meeting we would be ready with a book chosen according to whatever genre we were allocated.  So last month it was decided that I would host the September meeting and the genre I had been allocated was historic fiction.  Now that was an easy genre for me because I really love reading historic fiction particularly Australian history and books written by women.  So the book I chose was BEHIND THE SUN  by DEBORAH CHALLINOR.

The book tells the story of four women on a perilous journey to Australia.  Its the story of them relying on their wits to survive. The four women form a bond  and a strong friendship. There is streetwise prostitute Friday Woolfe  who is in London’s notorious Newgate gaol, awaiting transportation. Whilst waiting there she meets three other girls:  opportunistic  but intelligent thief, Sarah Morgan, naive young Rachel Winter, and reliable and capable seamstress, Harriet Clarke.

On the voyage to New South Wales their friendship becomes unbreakable – but there are others on board who present a challenge to their future. Friday makes an deadly  enemy of Bella Jackson, a ruthless woman whose power seems undiminished by her arrest and transportation, while Harriet is taken under the wing of a young  doctor, James Downey. Rachel catches the eye of a sinister passenger with more than honour on his mind.When they finally arrive on the other side of the world, they are confined to the grim and overcrowded Parramatta Female Factory. But worse is to come as the threat of separation looms. The author uses the simile “the land behind the sun” to describe Australia.

This book is the first in a series of four and many members of the club have continued on, including myself, to find out how the tale develops.  Deborah Challinor is a great writer and she evokes clear images of London and colonial Australia which demonstrate she has done much research.  When I googled her to get some background, I found she had lived in Australia for four years in order to conduct the research.  She is a New Zealander, as is one of the member of the club.  I also remembered during my reading about the author that I had read another of her books called FIRE, which I would also recommend.

Of course when you host book club it falls to the member to provide afternoon tea.  I was considering last night cancelling the get together as I felt so woeful and the pain so elevated.  But as we say tomorrow is another day and when I woke this morning I was feeling a little better and decided to proceed.  I could not have done it without my HB as he helped me get things ready and when I asked to be taken to Bunnings to buy something for morning tea he knew I really meant Aldi and did not miss a beat.

You see when I am in a flare or coming out of a flare I have dreadful trouble with getting the words out……or I should say getting the right words out.  The group this afternoon will attest to that as I really struggled with people’s names this afternoon and often came out with the wrong name or could not even get a name out.  The pain this morning was about a 6/10 and now its probably an 8/10. You could say I that is because I have done too much but I say thats just the way it is.   the pain can escalate if I do too much and do not pace myself to it can escalate for no apparent reason. 

So thanks ladies for a great discussion this afternoon and for helping me get through this flare relatively unscathed.  

The Seesaw of CRPS

It has been a really long night.  As a matter of fact it has been a really long couple of weeks.  Again sleep has eluded me such is the quantum of the pain I am currently experiencing.  I cannot think what the pain would be like without the number of tablets I currently swallow every morning, noon and night.  

I could not watch television any longer so I was in bed last night by 7.00pm. I could not sleep and thus I could not stay in bed past 1.40am.   This is one part of the CRPS that I really hate.  A couple of nights of not being able to sleep for some reason really rattles me.   So since the early hours of this morning I have read and Facebooked and watched Wentworth.  Thanks to my eldest granddaughter for introducing me to this….binge watching has got me through till the early morning.

I know that what I am currently experiencing will subside somewhat, it always does.  Although the pain never completely goes away it will recede, I hope, to a reasonable, manageable level.  A level at which I can wear my shoes and wear a something covering my left arm.  When things are bad, the pain prevents even these simple acts.  I told my Hb last night that not only did I have burning in my left arm it feels like i have a broken bone.

Earlier in the week I experienced a new symptom and that is one of the challenges of CRPS. I have experienced CRPS in the side of my neck and face before but on Wednesday and Thursday I could feel ants biting the inside of my cheek and the side of my tongue.  When I saw the GP she said that she was not sure that I would be experiencing CRPS in that area. Luckily that symptom has settled, but subsequent research indicates that it can spread to any part of the body including the tongue. There is little knowledge among the general medical community about this condition.  Yes they know what it is but very few, except for the  senior pain specialists have more than a  limited knowledge of the condition.  I am not being critical of the GP involved just stating the facts as I have experienced them.  There is little public and medical awareness, quite often when I tell people I have a chronic pain condition called Complex Regional Pain Syndrome they say they have never heard of it and if I try to stay positive I am sure to be alright or if I try acupuncture or hypnotherapy  or some other treatment then that is sure to fix it.  I often see a look of “I think she has made that up”   I did have one doctor tell me that he thought the pain specialist had made up the term just to give me a name to call it.  When I complained  about this to the pain specialist I was seeing at the time he suggested if it was easier I should just tell people I had MS.  My response to him (and this was at my last appointment with him before I changed specialists ) how we will change things if we deny its existence. 

Hence the reason I started the blog was to raise awareness about CRPS and chronic pain in general.  I have been a little remiss in not writing much during this year but that is something I am hoping to change. The condition is a bit like being on an out of control seesaw there are many ups and downs and sometimes it seems there are too many downs but most days I can embrace what is happening and work towards an acceptance of what has befallen me.

The passing of a friend

Today I have been to the funeral of a very dear friend. My friend and I went to primary school together so our friendship is very long standing. I have found it hard to deal with her passing as she was only 66 in July. Of course if she would introduce me to anyone she would say “this is my friend Anne, we were at school together but of course she is so much older than I” The age difference was a mere 11 months!!!!

She was moving through her life having retired from full time work in education to doing part time work in adult education. In September she was diagnosed with stage four ovarian cancer and given a 5% chance of beating this insidious disease. Unfortunately she was in the 95%. She endured some fierce chemotherapy, several admissions to hospital and surgical procedures during this time.

She made her mark in education for deaf, hearing impaired children and children with special needs. She worked in leadership positions at a diocesan and school level making a tremendous difference to the lives of the kids in her care.

She was a gracious host and I enjoyed her hospitality on many occasions, Most memorable was when she rang out of the blue to offer Mum and I accommodation in her Sydney home whilst my Dad was having open heart surgery at the Royal Prince Alfred Hospital.

Her move to live back in Newcastle meant we got to see more of each other and share many events. Even when she was moved into the hospice her graciousness in the face of her demise was laudable. Many people visited, I am sure all with a sense of disbelief, that a woman who was such a life-force and demonstrated so much joie de vivre could be in this position.

At her funeral today her husband spoke of his love for her with the reverence of true love. They met and married later in life. Lived abroad for three years and were able to travel the world together. Her sister spoke of what it was like to have her as an older sister and the specialness of their relationship. Her brother then spoke about what being her brother meant to him and the way he teased her and played pranks on her when they were younger.

At the end of the requiem when the coffin was being carried out by her husband, nieces and nephews and the congregation was processing another old school friend and I who were both visibly distressed held hands with each other and walked behind the coffin as it was placed in the hearse. We did have a little joke and a laugh later on as we held hands all the way down the aisle in the church just like we would had done with our “partner” in primary school.

My reason for sharing her story is to emphasise the importance of living each day to the full, marking off the things on the bucket list because we don’t know what is ahead of us. We cannot predict the future nor can we change it so living in the moment has been brought home to me with a bang.

In his eulogy her husband quoted Breaker Morant “Live every day as if it were your last and then some day you’ll be right.”

Rest gently my gracious friend……May the choirs of angel come to greet you, may they lead you to paradise.