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Hi, everyone, I guess you would have noticed that during the last few weeks my posting hasn’t been up to scratch but that should be changing as I am going to start setting apart one day a week to write up posts which is what I have done for years but recently I stopped doing that and was writing the post the day I was posting it.
Now for a bit of honesty as I am sure most are aware I have Parkinson’s
Disease well the last couple of weeks I have felt overwhelmed and in so much
pain day after day, in the evenings I often feel so tired it is an effort to focus
and stay awake but when I say I am going to bed early Tim will say something
that makes me feel that I shouldn’t be and I know he doesn’t mean to make me
feel bad in any way but I do.
My day starts at 5am and yeah, I know some would say why get up
so early, but I like the quiet of the morning and I am most productive first
thing by 10am I am starting to feel worn out and need to put my feet up and
rest for a while. I am thankfully able to do most of the housework there was a
while there before I was medicated that I could do bugga all.
During these really cold days I have been getting a lot of
headaches and body aches and having moments when everything seems too much to
deal with.
I have daily pain and stiffness, at times I have insomnia (but
thankfully I am sleeping well at the moment), weakness, and stiffness when
standing and walking for a bit till my legs come good. I have to stand and get my balance, and the
first few steps can look odd but once things start to work, I am ok. I have had
times when sitting is uncomfortable due to my body aching or me starting to
feel stiff all over.
I often struggle to get words out the path between my brain and
mouth is often blocked and can make things difficult. I will often jumble up
what I am trying to say, and it is frustrating to me. Tim often comments that I take too long to
answer him but I’m doing the best I can.
Swallowing can be an issue at times and yeah, I know I should
take smaller bites, and I do try to do so but there are times I don’t remember
to do so, there have been many times when food gets stuck, and I am chocking
and coughing trying to dislodge it.
I have gained weight again and this is very depressing for me,
telling me to eat less doesn’t help reminding me how much weight others in the
family have lost doesn’t help, it just depresses me more.
My body can get very cold during winter and very hot during
summer and having someone comment oh you’re cold or oh you’re hot with that
shocked tone is also depressing for me. I can’t change how I am all I can do is
try and cope the best I can.
Life at the moment is a roller coaster that is moving slow, my
emotions are all over the place some days and I feel that the cold wet days are
affecting my moods, making it more difficult to deal with the depression.
I cannot thank my sister Sue enough for giving me back a sense
of a normal life, I get to go shopping regularly, I have someone to take me to
appointments and someone who I can laugh with, and we do laugh a lot when
together.
I am blessed with a loving and supportive family and none of
them say or do anything to intentionally upset me but there are times when I
feel some do not want to take the time to read and understand how Parkinson’s
having is affecting me.
Some may think I should take a break from blogging, but it is a
big part of what keeps me going day after day, like having to ring Sam 4 or 5
times in the morning to make sure she is up and getting ready for school.
There are days when everything feels like such a struggle and
way too much effort is needed to do anything and everything.
Anyway I am hoping that I will continue to improve and I will
make sure each Sunday I will take the time to write up posts for the following week.
I'm so sorry you have to struggle through this terrible disease. Because others don't feel it, they don't understand the pain you are going through. Keep blogging when you can Joanne ... and always do what makes you feel best.
ReplyDeleteHi Nancy, I will continue to blog it helps me feel connected with the world, pain is often hard to understand unless you suffer from it as well
DeleteI have cared for several Parkinson patients and understand the struggle from the caregivers perspective. I didn't know you have Parkinson's and I'm sorry to hear this. Your having supportive people around you matters a lot. We are all prone to saying or joining something unintentionally but it's good you know they value you. I'm hoping you can start to feel better, cold.rainy weather doesn't help.
ReplyDeleteHello Sandra, yeah things have been hard recently mostly emotionally but also things are improving so that's a plus, I know I am blessed to have so much loving support around me
DeleteIt’s good to share how you’re feeling and getting it off your chest. You know, your blogging buddies totally understand. I think sometimes the ones closest to us, just want to stay in denial because deep down they hate to see the suffering.
ReplyDeleteI wish I had some magic pill for you to take it all away but I don’t. I think you have done so much from those early days back when you didn’t have a diagnosis. Now you know what you’re dealing with. I will continue to pray for you dear, sweet Jo-Anne. I’m glad you shared your struggle. “Bear ye one another's burdens” Galatians 6:2
Hi Debby, thanks for this comment it has lifted my spirits today as it is cold, overcast and a bit wet outside. Yeah I am doing much better then I was a few years back. I take it one day at a time and sometimes I feel the need to share how I am feeling and coping because people don't know unless we tell them
DeleteYou are certainly going through the wringer, Jo-Anne, and I'm so glad you made the effort to share what you're going through here. Know that you always have a supportive audience here in Blogland, and lots of us will continue to pray for you. Know you are loved!
ReplyDeleteHi Martha, as I just said to Debby above people don't know unless we share with them how things really are, I am blessed to have so many wonderful followers here in blogland who offer support and kind encouraging words
DeleteI'm glad you told us what it has been like for you. I think you are doing amazingly well under the circumstances. Glad you've been sleeping well. And you are blessed to be surrounded by family who love you. :) :)
ReplyDeleteHello Rita, thank you for those kind words, yes I am blessed to have a great family as well as amazing friends here in blogland, sleeping well helps a lot
DeleteI am so sorry to hear this. I know my husband has a way of saying things that make me feel bad with all that I have going on with my health. I will be praying for you. ((Hugs))
ReplyDeleteHi Debby, some people don't realise how the way something is said can have a negative affect of someone, Tim is often clueless as to how some things come across
DeleteI think the people who blogged for entertainment instead of therapy have long since left the field. And yes, we men are real good at the "speak first ask questions later" thing.
ReplyDeleteHi Chris, I think you are right most of us blog as a way of therapy it's free and can help a lot
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