Lying here on the ward in rehab, I reflect on my first day. My mind whirls and is overwhelmed with information, possibilities and hope.
My stay didn't start as I had hoped. My letter said I was here for three weeks but it was a mistake and I'm only here for one week. The hope of trying to change my life dwindled in that second, the second I felt like the rug had been pulled out from under me. I could of completely given up in that very moment but I've fought to hard to stop trying. Ok so I won't be here for three weeks but I'm incredibly lucky to have another chance. I can see the negative or the positive. I chose the positives.
My one week has been tailored to me. I will learn how to pace with my condition so i stop wearing myself out, learn new exercises and i will have the input of a health phycologist. I've been searching for one for years but they don't have them in my area.
So now as i close my eyes to sleep and the day descends in to darkness, i will wake tomorrow to start a new page of my journey.
Monday, 10 February 2020
Tuesday, 4 February 2020
Chronic illness acceptance
Today I had a reality check. It's time to stop searching for a magic pill to cure my chronic illnesses and accept them as what they are.
I didn't realise that I haven't been coping for a while since I'd tried some new medication. Mum came to the rescue today as my brain was so foggy that i just couldn't figure out how to have a shower.
I've fort my conditions for years but what I haven't done is accept them. This is key to any chronic illness. You have to work with it or it will bite back 10 times worse.
Although my daily quality of life isn't what i want it to be, i only realise that its actually not to bad after I've tried a new medication that wrecks my brain and body. I'm always chasing a new treatment to help my fatigue and allow to me be 'normal' but the grass isn't always greener.
So after 16 years it's now time to work with what i have. I was basically born with chronic fatigue so it's something i will never not have. Although my consultant is hopefully going to test me for sleep apnea as it's common in Ehler's Danlos syndrome.
Next week i embark on a new adventure. I'm off to rehab at Stanmore for three weeks. I did the course previously about 4 years ago but it just wasn't the right time for me. This time I'm ready to get the most out of it.
I found it very demanding before as its a busy schedule with lectures, physio, swimming and phycologist so I will just have to take rests when i can. Last time i had to skip a few classes so i could rest.
My goals are also different this time. I'm not going there to walk learn to walk again. This is a massive thing for me as doctors in previous years have seen it as priority, although I've only ever been told my best hope is to stand. I had a chat with the physio that i saw last year and I'd burnt myself out because i thought i had to learn to walk again. It was actually pressure from other people that i had that in my head. The physio said one thing that changed my perception' you can live a perfectly normal life from a wheelchair. ' From then on my priorities changed.
I have these conditions but i want to be the strongest i can to hopefully help the fatigue and pain as we need our muscles to take over from ligaments. I will never been bodybuilder strong but i can be strong within my own limitations. I also want to learn pacing techniques as I'm always in the boom and bust cycle which is more busted at the moment. My next goal of acceptance is to also accept that it's ok to put myself first rather than trying to please other people. I also need to stop striving for the life i once wanted. I can still enjoy life it will just be different path and that's ok with me.
Sorry this turned into a rather long post.
Have a good week everybody.
Love Hayley
I didn't realise that I haven't been coping for a while since I'd tried some new medication. Mum came to the rescue today as my brain was so foggy that i just couldn't figure out how to have a shower.
I've fort my conditions for years but what I haven't done is accept them. This is key to any chronic illness. You have to work with it or it will bite back 10 times worse.
Although my daily quality of life isn't what i want it to be, i only realise that its actually not to bad after I've tried a new medication that wrecks my brain and body. I'm always chasing a new treatment to help my fatigue and allow to me be 'normal' but the grass isn't always greener.
So after 16 years it's now time to work with what i have. I was basically born with chronic fatigue so it's something i will never not have. Although my consultant is hopefully going to test me for sleep apnea as it's common in Ehler's Danlos syndrome.
Next week i embark on a new adventure. I'm off to rehab at Stanmore for three weeks. I did the course previously about 4 years ago but it just wasn't the right time for me. This time I'm ready to get the most out of it.
I found it very demanding before as its a busy schedule with lectures, physio, swimming and phycologist so I will just have to take rests when i can. Last time i had to skip a few classes so i could rest.
My goals are also different this time. I'm not going there to walk learn to walk again. This is a massive thing for me as doctors in previous years have seen it as priority, although I've only ever been told my best hope is to stand. I had a chat with the physio that i saw last year and I'd burnt myself out because i thought i had to learn to walk again. It was actually pressure from other people that i had that in my head. The physio said one thing that changed my perception' you can live a perfectly normal life from a wheelchair. ' From then on my priorities changed.
I have these conditions but i want to be the strongest i can to hopefully help the fatigue and pain as we need our muscles to take over from ligaments. I will never been bodybuilder strong but i can be strong within my own limitations. I also want to learn pacing techniques as I'm always in the boom and bust cycle which is more busted at the moment. My next goal of acceptance is to also accept that it's ok to put myself first rather than trying to please other people. I also need to stop striving for the life i once wanted. I can still enjoy life it will just be different path and that's ok with me.
Sorry this turned into a rather long post.
Have a good week everybody.
Love Hayley
Wednesday, 15 January 2020
Me, myself and i
I'm laying in bed this evening with tears streaming down my face.
I type various word combinations into google looking for help, something to take the suffering away, to find answers, to find a purpose.
You see living with chronic illness doesn't come with a manual on how to cope, how to grieve the loss of your past life, but the grief changes day to day as you realise somethings you could do a week ago you can no longer do.
What is my purpose I ask. What do i give to society.
I realised today that doctors aren't going to cure me. I thought i had stopped hoping but as i sat crying in my gastro doctors office, i became apparent that this is probably it.
Only i can help myself now, but how do i do that while feeling so unwell.
Maybe it would be better for my mental health to accept the here and now and stop searching, because when my mind is on the future, I'm missing the now.
One day i hope there will be medical psychologist to help people learn how to cope. But for now it's just me, myself and i.
I type various word combinations into google looking for help, something to take the suffering away, to find answers, to find a purpose.
You see living with chronic illness doesn't come with a manual on how to cope, how to grieve the loss of your past life, but the grief changes day to day as you realise somethings you could do a week ago you can no longer do.
What is my purpose I ask. What do i give to society.
I realised today that doctors aren't going to cure me. I thought i had stopped hoping but as i sat crying in my gastro doctors office, i became apparent that this is probably it.
Only i can help myself now, but how do i do that while feeling so unwell.
Maybe it would be better for my mental health to accept the here and now and stop searching, because when my mind is on the future, I'm missing the now.
One day i hope there will be medical psychologist to help people learn how to cope. But for now it's just me, myself and i.
Tuesday, 14 January 2020
Long overdue update
Gosh I didn't realise how long it had been since I updated my blog. Last year was really tough mentally and physically but I'm still here. There were times I didn't think I would be or even wanted to be.
The end of last year things got abit better. I managed to get my new electric wheelchair which has made life alot easier. Just a recap for people that don't know me. I have ehlers danlos syndone, postural orthostatic tachycardia syndrome, gastroparesis, spinal issues and exhaustion which is beyond exhaustion. I've been a fulltime wheelchair user for nearly 8 years now. Wow it's gone so quick.
My electric wheelchair broke early last year and through people's generosity i managed to get a new chair. It has a tilt on it as i have blood pressure issues and it helps to tilt backwards. Also i have a riser on it so i can now reach my kitchen cupboards 😂 Massive Thankyou to everyone that has donated.
The end of last year things got abit better. I managed to get my new electric wheelchair which has made life alot easier. Just a recap for people that don't know me. I have ehlers danlos syndone, postural orthostatic tachycardia syndrome, gastroparesis, spinal issues and exhaustion which is beyond exhaustion. I've been a fulltime wheelchair user for nearly 8 years now. Wow it's gone so quick.
My electric wheelchair broke early last year and through people's generosity i managed to get a new chair. It has a tilt on it as i have blood pressure issues and it helps to tilt backwards. Also i have a riser on it so i can now reach my kitchen cupboards 😂 Massive Thankyou to everyone that has donated.
I didn't want to write to much in this post so I'll do another update soon. Hopefully not in 7 months time 😂
Love Hayley x
Tuesday, 2 July 2019
The power of gratitude and fighting back
I'm still here, still fighting and much happier.
My antidepressants are working and I'm really rather content. Grateful that i got through the dark times, grateful for the support received.
On reflection i realised why things got bad. I burnt myself out. I had hospital appointments most days so wasn't getting adequate rest. I was trying to be 'normal '. Well if other people can do it, so can i. The reality is I cannot do it. I live a quiet life for a reason and that is so i can manage my condition and use what little energy i have on things i enjoy.
Now this brings me onto my next reflection. Gratitude.
Last Friday i attended a gratitude workshop. Its run by the council for mental health. I wasn't sure what to expect but it really changed my perception on life. I've been dragging myself through the days, hoping for something better tomorrow, without appreciating what i have in this moment.
So here is a list of things i am grateful for :
1. I'm incredibly grateful for antidepressants being made. There is no shame to admit it. They have given me a life when i was in the midst of despair and not seeing a way out.
2. I'm grateful to the changingminds service on the nhs who helped me with cbt.
3. i'm hugely grateful for people who have donated or shared my gofundme me page. I cry every time at the incredible generosity of people. Many i have never met. So thankyou from the bottom of my heart
4. I'm grateful i could hear the birds singing and see the sun shining
5. I'm grateful that despite living a slower life, i get to watch the plants grow, people smile, the clouds in the sky and my cat playing in the garden.
These are just a few things i am grateful for. What are you grateful for today ?
Before i go i thought I would share a picture of mia helping me plant seeds, or rather just wanting fuss 😂
My antidepressants are working and I'm really rather content. Grateful that i got through the dark times, grateful for the support received.
On reflection i realised why things got bad. I burnt myself out. I had hospital appointments most days so wasn't getting adequate rest. I was trying to be 'normal '. Well if other people can do it, so can i. The reality is I cannot do it. I live a quiet life for a reason and that is so i can manage my condition and use what little energy i have on things i enjoy.
Now this brings me onto my next reflection. Gratitude.
Last Friday i attended a gratitude workshop. Its run by the council for mental health. I wasn't sure what to expect but it really changed my perception on life. I've been dragging myself through the days, hoping for something better tomorrow, without appreciating what i have in this moment.
So here is a list of things i am grateful for :
1. I'm incredibly grateful for antidepressants being made. There is no shame to admit it. They have given me a life when i was in the midst of despair and not seeing a way out.
2. I'm grateful to the changingminds service on the nhs who helped me with cbt.
3. i'm hugely grateful for people who have donated or shared my gofundme me page. I cry every time at the incredible generosity of people. Many i have never met. So thankyou from the bottom of my heart
4. I'm grateful i could hear the birds singing and see the sun shining
5. I'm grateful that despite living a slower life, i get to watch the plants grow, people smile, the clouds in the sky and my cat playing in the garden.
These are just a few things i am grateful for. What are you grateful for today ?
Before i go i thought I would share a picture of mia helping me plant seeds, or rather just wanting fuss 😂
I hope you all have a lovely day x
Monday, 17 June 2019
The spiral of hell
My mood improved for a few weeks after restarting my antidepressants. Sadly it seems to be spiralling downwards again. I've decided to up the dose to what i was on before I stopped taking them. Praying it helps.
I'm just so so tired. Tired of living. Tired of the chronic pain. Tired of fighting. I drag myself through everyday hoping tomorrow will be better. That hope never arrives....
Tuesday, 21 May 2019
Can I really put myself out there
That is the question I ask myself. Can I really put myself out there? The side of me that I desperately try to hide so that I'm not judged, or even worse, pitied.
Let me elaborate. Since i updated you on my last post, i have been feeling better everyday. I'm ready to start living life again but there is only one problem. My electric wheelchair decided to die. Rip. Without it i'm abit stuck. Unfortunately my bungalow is situated on a steep incline, so i cannot push my manual wheelchair up or down, i can't even push my wheelchair very far without help. This means I'm now back to relying more on my carers and friends just to even go to the shop.
Sadly I cannot afford to replace my electric wheelchair , so after much consideration i set up a gofundmepage. Now i'm quite a private person (ok you might not think it according to my blog posts) but in real life I don't actually talk in depth about how my illness affects me. I always want to be treated as a person who just happens to be sitting down.
By not talking about it much ,it gives me the illusion that all is ok and I'm relatively normal. However it has its drawbacks. People assume your ok, you can cope. You eventually burn yourself out try to live up to this false reality. So where do you draw the line from people understanding your limitations to wanting to appear normal.
This is the dilemma i have at the moment. To enable me to fundraise for my page, i have to put myself out there. The raw, vulnerable me. The me that had hopes and dreams before my conditions took them away and I'm terrified. Terrified of peoples reactions, 'what will they think of me', what if they think I don't deserve a new chair', 'will the whole village be gossiping about me', 'will i be scrutinised for every movement i make'.
Although my original hopes and dreams are a distant memory, i long to make new ones, to meet to people, to continue my journey. Just in a different way and hopefully with a new wheelchair i can do just that x
https://www.gofundme.com/hayley039s-wheelchair-fund
Let me elaborate. Since i updated you on my last post, i have been feeling better everyday. I'm ready to start living life again but there is only one problem. My electric wheelchair decided to die. Rip. Without it i'm abit stuck. Unfortunately my bungalow is situated on a steep incline, so i cannot push my manual wheelchair up or down, i can't even push my wheelchair very far without help. This means I'm now back to relying more on my carers and friends just to even go to the shop.
Sadly I cannot afford to replace my electric wheelchair , so after much consideration i set up a gofundmepage. Now i'm quite a private person (ok you might not think it according to my blog posts) but in real life I don't actually talk in depth about how my illness affects me. I always want to be treated as a person who just happens to be sitting down.
By not talking about it much ,it gives me the illusion that all is ok and I'm relatively normal. However it has its drawbacks. People assume your ok, you can cope. You eventually burn yourself out try to live up to this false reality. So where do you draw the line from people understanding your limitations to wanting to appear normal.
This is the dilemma i have at the moment. To enable me to fundraise for my page, i have to put myself out there. The raw, vulnerable me. The me that had hopes and dreams before my conditions took them away and I'm terrified. Terrified of peoples reactions, 'what will they think of me', what if they think I don't deserve a new chair', 'will the whole village be gossiping about me', 'will i be scrutinised for every movement i make'.
Although my original hopes and dreams are a distant memory, i long to make new ones, to meet to people, to continue my journey. Just in a different way and hopefully with a new wheelchair i can do just that x
https://www.gofundme.com/hayley039s-wheelchair-fund
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