Restless Leg Syndrome (RLS)

Dear Suzf,

So glad to have your response. I was a little concerned that I had spoken as if I knew all the answers. It seems like you have all of the right strategies in place and you are aware of surrounding yourself with positive energy, you don't need the rest. This illness certainly sorts out the wheat from the chaff amongst your friends. I was thinking about your situation and wondering what it is you can do to alleviate your stress and worry.  Perhaps your photography can be a means of expressing your artistry and learning how to appreciate what you do have and not dwell on what you have lost. For me, it is important to make plans for the future, why waste time thinking you will not make it, and then you do. That precious time then has been wasted for no reason. I like to have at least one thing to look forward to, whether it be a holiday away, a weekend away, a family wedding or new arrival.  I also have taken advantage of a beautiful week away through the Otis Foundation. This was a lovely time with the family, at no cost and in a lovely location at Corryong (Blue Wren Cottage). It recharges your batteries.  Not sure of your situation or location, but consider this, or some other break away. I have taken up quilting and whilst I am not very good, I have completed several pieces which I am quite proud of. Our situation is unique, in that women who have always put others first, now have to concentrate on their own needs and give this illness the attention it deserves,  You have been given something special - extra time. I do hope you can find peace and good health in the  New Year.

Shirley T

Thank you New Nana and Sandy47 for your encouraging words of wisdom.  I now live for the day most of the time and do not plan ahead very much, previously I had 5 and 10 or 20 year plans for the future.  This is something that does disturb me as I need to look forward to something to make sense of my life.  

I can never predict how the next day will be for me physically or mentally but I always seek the positive wherever possible.  I am finding actively positive people, not just 'you'll be right' people are the best to have around me.  Even as far as medical practitioners who provide certainty in their voice and body language they will be able to help me find ways to not just survive but thrive, make my day feel much better.

Whenever I have negative thoughts I find positive thoughts to counteract them.  I am listening to my body and do not worry if I need to rest due to the fatigue ever day - even at work I take time to rest at midday with my feet up and mentally switch off for a period.  I am somewhat drowsy afterwards but pick up very quickly and can continue with the day as it comes.

I am finding various ways of coping with specific side effects but I am certain having positive work mates and family members helps me so much and positive medical practitioners makes all the difference for me.  Not just people who give you a pep talk and walk away, but people who are really interested in your quality of life and really listen to you without any judgement.

My New Year's resolution is to surround myself with only positive, sensitive and loving people and do the same for other people as well, giving as well as accepting support.

I wish everyone a wonderful and exciting New Year 2013 with lots of enjoyment and happiness every day from Suzf xxxxx

Thank you New Nana and Sandy47 for your encouraging words of wisdom.  I now live for the day most of the time and do not plan ahead very much, previously I had 5 and 10 or 20 year plans for the future.  This is something that does disturb me as I need to look forward to something to make sense of my life.  

I can never predict how the next day will be for me physically or mentally but I always seek the positive wherever possible.  I am finding actively positive people, not just 'you'll be right' people are the best to have around me.  Even as far as medical practitioners who provide certainty in their voice and body language they will be able to help me find ways to not just survive but thrive, make my day feel much better.

Whenever I have negative thoughts I find positive thoughts to counteract them.  I am listening to my body and do not worry if I need to rest due to the fatigue ever day - even at work I take time to rest at midday with my feet up and mentally switch off for a period.  I am somewhat drowsy afterwards but pick up very quickly and can continue with the day as it comes.

I am finding various ways of coping with specific side effects but I am certain having positive work mates and family members helps me so much and positive medical practitioners makes all the difference for me.  Not just people who give you a pep talk and walk away, but people who are really interested in your quality of life and really listen to you without any judgement.

My New Year's resolution is to surround myself with only positive, sensitive and loving people and do the same for other people as well, giving as well as accepting support.

I wish everyone a wonderful and exciting New Year 2013 with lots of enjoyment and happiness every day from Suzf xxxxx

I understand where you are coming from!

Everyone expects me to be the same person I was before BC but I feel different physically and most of all mentally!

I emphatically believe no one can understand how feel or the daily anxiety that we/I feel in regards to reoccurance or secondaries.

I told my husband that if I had to go thru chemo again I would probably refuse because I found it horrendous but who knows, I would probably change my mind if death was the other option.

People tell me how strong I am, what they don't know is that what they see is what I want them to see, the demons inside of me prefer to stay quiet because of the false platitudes people offer! I have found that is how they cope, by saying od course it is going to be ok, and I will be back to 'my old self' in no time. That old self has dearly departed forever, now I am someone different.

I used to love my job, now I merely get thru the day, but am exhausted and stressed at the end of each day. My collegues don't understand how I am feeling. I don't think my family does either because all they want is for me to 'go back to normal', they refuse to think that in 5 years I may not be here!!!

However hard, life does go on and we just have to find where we fit into it!

By the way, I am 48 years old, married with 4 adult children.

regards

Sandy

Dear Suzf,

Just opened up your message this morning and wish to encourage you. There are better days ahead I am sure.  There are other drugs which may suit you better and I hope you have a good oncologist to advise you. Sometimes even a three week break from the drug and clear it out of your system (which is something my oncologist said they can do).

However the disease is what it is, how you handle it will determine your quality of life. Something my son said on a card to me has always encouraged me. He said I chose to be positive and I guess I do exactly that, no time to waste, so much to do with a new grandchild on the way, and others to assist. I have been on Arimidex for 2-1/2 years and it makes my joints stiff.

My wish is for you to find peace. For me it comes from my personal faith however if that is not your thing, you must find it in other ways.  Occupy your mind and body with other things beside the illness. I can only say these things because I have been there as well.  For me, a garden is my place of serenity where I can contemplate what has happened, relax and enjoy the beauty which surrounds us all. May peace and good health come your way in the year ahead. Happy New Year 2013.

Thanks Sandy,

yes it does get me down and my family as well, they thought now I have finished with the surgery and radiation I should be back to my old self!

 

Sadly I can only say along with the lymphoedema and all the other issues my body is building up while I am taking tomoxifen, my body seems to be rejecting the good life and telling me on a daily if not hourly basis it is feeling the strain of daily doses of tamoxifen after 2 years - yet I am expected to get through 3 more years if not more.  

 

Eventually I can see I am going to have to decide either to take the risk of recurrence and stop the tamoxifen - I am not going on the others, or find as much relief as I can from the reactions to the toxicity of tamoxifen and live with it.

 

I am changing my life style to adapt to my body's needs but I hunger for a better quality of life as well.  Why must we suffer for so many years to survive with such a poor life style we wouldn't wish on anyone else?  I am a young woman of 63 in a 90 year old woman's body.  My mind tells me I should be able to do so many things and enjoy my life as a BC survivor however I don't feel like a survivor if I am constantly reminded on a daily basis of recurrence. Will I ever be able to put aside the feeling of BC hanging over me like a bad omen ready to pounce at any minute?  My counsellor tells me I need to accept it and my mind says no way - either I am cured or I am not!  Wish I knew where I stand!

Enough, I will never be able to answer this question - not unless medical research comes up with the answer soon and so I hold up my head and shed a tear now and then - sometimes bold and other times sad - that's my life now and possibly forever....strength comes from support from people like you Sandy and all the others who listen with their hearts and hold out a welcoming hand - I love you all sentimental as that sounds - you are always there when I need you.

Lots of love and many wishes for a happier and healthier New Year from Suzf xxx

Thanks Sandy,

yes it does get me down and my family as well, they thought now I have finished with the surgery and radiation I should be back to my old self!

 

Sadly I can only say along with the lymphoedema and all the other issues my body is building up while I am taking tomoxifen, my body seems to be rejecting the good life and telling me on a daily if not hourly basis it is feeling the strain of daily doses of tamoxifen after 2 years - yet I am expected to get through 3 more years if not more.  

 

Eventually I can see I am going to have to decide either to take the risk of recurrence and stop the tamoxifen - I am not going on the others, or find as much relief as I can from the reactions to the toxicity of tamoxifen and live with it.

 

I am changing my life style to adapt to my body's needs but I hunger for a better quality of life as well.  Why must we suffer for so many years to survive with such a poor life style we wouldn't wish on anyone else?  I am a young woman of 63 in a 90 year old woman's body.  My mind tells me I should be able to do so many things and enjoy my life as a BC survivor however I don't feel like a survivor if I am constantly reminded on a daily basis of recurrence. Will I ever be able to put aside the feeling of BC hanging over me like a bad omen ready to pounce at any minute?  My counsellor tells me I need to accept it and my mind says no way - either I am cured or I am not!  Wish I knew where I stand!

Enough, I will never be able to answer this question - not unless medical research comes up with the answer soon and so I hold up my head and shed a tear now and then - sometimes bold and other times sad - that's my life now and possibly forever....strength comes from support from people like you Sandy and all the others who listen with their hearts and hold out a welcoming hand - I love you all sentimental as that sounds - you are always there when I need you.

Lots of love and many wishes for a happier and healthier New Year from Suzf xxx

I never experienced the cramps just the endless muscle pain associated with the Zoladex and Leterozole.

It's a bit unfair to have no cancer at present but the side effects from all the meds that we have to take to decrease chances of it returning!

Sandy