Oh I wish I could come over and give you a hug and chat and tell stories and moan a bit too and watch old Goldie Hawn movies because I know what it’s like, even if I have it differently and yours sounds way worse, but I know and the NHS sounds exhausting to deal with. Can you find a good acupuncturist? I know it sounds like a few little pricks aren’t going to solve the big problems but it definitely helps manage mine… Fly over here to see Dr Dong! big hugs my love ❤️❤️
Thank you Cesca that's so sweet. A movie night sounds so good right about now! I do think I will have to start looking into alternative medicines to help along side the meds, as the pain and fatigue is hard to deal with a lot of the time. I've heard many good things about acupuncture, I will have to do some investigating to see who is recommended near me ☺️ lots of love. Btw I hope your recent procedure went well x
Firstly, I have no doubt this will land deeply with so many of us readers. It was my belief when I got diagnosed that the whole point of being referred to a “specialist” was so that they could help me get to root of the problem and support me back to wellness !!
What strikes me now though is that that was a belief that come from some place else, some other lifetime perhaps. Because I’m seeing a lot of dismissal and resistance around root cause of disease lately. So why did I go all in root cause if this is not the norm? I’m so thankful to myself now that I stayed on this track even though it was brutal to hear that the nhs weren’t going to help me do that.i found another way.
I’ll come back and reply with more after my writing class 😘
Thanks Amber. It's a bit of a scary realisation isn't it. I've found a lot of comfort and wisdom in your writing discussing this same thing. I look forward to hearing more :) have fun at your writing class x
I can’t remember where I wanted to go with my response now but I do want to reflect back a few things. There is so much I can see you’re processing here. I love your husbands gorgeous act of love - with that kind of support, it takes you far. It doesn’t sound to me like you are wallowing in self pity, you are making space for your grief. Something my friend Sheila writes about on here (for her it’s the grief of infertility - as a direct result of her chronic and disabling illness).
We share the same belief “anything is possible”. I know it’s like me telling you what to do which I try my best to refrain from, but I want to encourage you to keep hold of that belief, stay true to it. And about how you know that writing, being of service and community is what you’re here for. You don’t need to have it all figured out. It’s enough to know this for now. And your belief about bringing about change in the world. This is possible. It starts with making space for self. And believing.
Ah Amber thank you so much, you always seem to know exactly what I'm trying to say and what I need to hear for a much needed boost and reassurance 😄 I think I just needed to hear that there is still something to keep fighting for and to look forward to in life really. Something to give us a little bit of hope that life won't always be about illness but good things too ☺️ x
It was a big thing for me to jump on the Facebook bandwagon (as was back then) and share my photos of the year in 2018. Following suit of everyone else’s.
It was a huge surprise for me to realise amidst the catastrophe of losing my dad, my health, my income, my career and receive the confirmation that no one was coming to my rescue, aid or support (other than me) that there was some joy and hope and magic, freedom and choice too.
I often say to really anyone who is listening, that the wins are only there when you look for them. And they can still be found even when dealing with the debris of what once was your life.
Yes and the grief keeps changing. I thought I had it nailed and sorted. Then the fatigue has hit me again and I’m side swiped (again). I have only had enough energy to write notes about it of late rather than a full blown post. The joys of chronic illness keep on giving, and the only reason it has come back is because I HAVE HAD TO WORK. I love my new job but I now acknowledge the only reason I thought the chronic fatigue had gone was because I had total control over my time. No I don’t I’m screwed it seems. Work or be healthy ? Interesting choice I’m hoping to not have to make. Balance that will sort it all out …right?
I feel you! The grief comes in waves for me too, a flare up or hormones can bring it out all over again.
I'm sorry you're having a difficult time with work/energy balance. Its such a hard balance to achieve, but hopefully one you can find 🤞💕 it's good that you enjoy your new job and hopefully the people you work with are understanding? I think that goes a long way. Sending you hugs x
hi - i will join you at the top of the mountain because life does throw shit at you and i feel angry when other people seem to have such an easy life and it is very easy to question yourself "Why me? what have i done wrong to deserve this?" and then if i go for a walk and i know a particular person and know never will they ask how i am feeling, i tend to cross the road. Someone at your mum's work said that the human being will wallow in self pity (and you are allowed to by the way as its the healing process again) and then you feel sorry for your self and fee angry with the world and you realise that its not use comparing your pain with someone else as each individual is living with their own pain - its not a competition after all but its bloody tough when life throws these rotten things at you. Is this when you turn to religion? even though does that help you. Can you paint a picture to show your feelings? does that help? One good thing i know which will make you laugh is that your dearest mother felt blessed when she met your father and when they went to Crete, she wasn't worried about body shaming at all. The story goes is that they both lied in the sand - topless - so she had that moment of freedom - that beautiful feeling - mind you they fell asleep and woke up just in time when the tide was coming in and about to take their clothes - eek!
Is there a programme you can join where you phone someone up who's on their own -' and just cht to them - sometimes helping someone else who is lonely gives you a buzz so you could go down that route every now and then but you are allowing to feel angry with the world.
once i was in such despair i just screamed out loud and someone said i shouldn't frighten anyone else and could i not do it somewhere else - f''ck them I thought - they've obviously never been 'there' before. Can you get those special 'virtual reality' goggles and whisk yourself away to a lovely place? I would get one of those reclining chairs and sit in it and imagine you are in a plane and then put the air conditioning fan on and go for a journey and stop for a drink etc and 'whisk' yourself away - if its one of those chairs that throw you out at the end - that could feel whacky and great -
Would one of those rag-doll cats that stay inside all the time, sitting on your lap, make you feel better now any then as I think its about trying to 'love' something else - just briefly which makes you feel you have a blessed reason to be in this life.
Have they given you anti-depression pills to ease your mental and physical pain? have they offered you the cannabid oil? yes, its not the answer but its little steps, like you say, that help you each day.
Are there any charity groups close by who would pick you up in their specially adapted mini buses and take you on a trip ?
There are special places where you can go into the rooms and throw axes to get rid of your anger, sadness, disappointment, etc so it does seem to be the norm that lots of people want to let their anger out and i think that is a good idea.
Would you get better treatment abroad? - trouble is that it all costs money doesn't it - which means it makes you even more angry. Look at Katie Price?
Are there any institutions which want you as a 'guinea pig' in a nice way ? Would you want to be part of a science project?
it is normal to have regrets and mourn the time when you should have been more selfish but it is in your nature to be kind and thoughtful so can you learn to be more 'selfish' sometimes?
I think it is a good idea to talk to yourself 'hey Amanda - you're doing really well today - well done - now go and make a tasty soup?' The human brain is so complex that i believe you can trick it every now and then - I believe we all have a Jekyll and Hyde in ourselves and you are allowed to be either cos you are a human with feelings .
you are writing very informative blog entries and your natural writing stories flow very well and they come from the heart and show exactly how you are feeling, etc so I for one hope that the person who teaches you to write doesn’t change your passionate way of writing as you have a ‘unique style’ which is not only informative but is from the heart and is very interesting and moving and easy to read and has your own personal touch to it.
I heard someone else on the radio talking about her blog and said it empowered her and made her accept the situation and made her feel stronger so is this happening to you?
When I was a child there was an actor called Jack Warner from a TV programme called ‘Dixon of Dock Green’ and I am sure he used to have bees stinging him on purpose to release a venom to help him with his arthritis, etc – have you looked into this? You never know, maybe insects and their substances in stings could be interesting - Mother Nature eh?
Can you adapt one of your windows into a 'balcony' so you can go out onto it during the day and have a chair to sit on and feel the sun on your face or watch people walking by so it becomes like a walk without the angst and becomes a 'go to freedom' place? is that possible ? and in the evg you can sit there for a moment and look at the stars? Can you ask your dear husband if that's possible?
keep going Amanda as I am sure people reading your blog feel 'better' even if for just one minute and when they write to you. they hopefully give you a few mins of peace too. xxx
Aw I like hearing about mums moment of freedom! I think that's what life is all about. I'm trying not to look too far into the future as that gives me anxiety, but just trying to live in each present moment, find the joys where I can. One foot in front of the other at the moment. I like all of your suggestions. I think it is all about layering up stuff that can help, there is no one quick method to feeling better but lots of little things.
Thanks for your kind words as always. Writing has really been helping and if it can help others too that's a huge bonus 😊 lots of love x
Amanda, I felt every word of this. Perhaps these lines from my latest post help in some small way:
“Despair washed over me for the first few years, and I look back on it with understanding and compassion. It was normal to grieve the way that I did. It was healthy, emotionally. It was necessary. You cannot fake your way to a feeling of hope - that’s called toxic positivity. You have to experience the depths in order to call up the courage to believe in the possibilities.”
You’re right where you need to be. Let it happen 😌
Wow Amy that perfectly sums it up, I love this, thank you for that. I think I just need to allow myself time to feel the emotions and just trust that I will come out the other side in due course 💕 x
Your post resonates hugely with me. And I feel so angry when I read about your awful experiences with the NHS. If I could I'd beam you over to Germany so you can get a more immediate treatment.
I was diagnosed after a period of four months. In that time, I did a lot of research myself and had a fair ideas what was happening. My work as a translator/editor of medical manuscripts gave me access to excellent data and very helpful researchers - in other fields but medical experts nevertheless. When I felt pretty certain, I made a private outpatient appointment with one of the experts I had read about. This involved having to pay for it myself but a free referral through the statutory health insurance was not on the cards at the time. This expert examined me very thoroughly and confirmed my fears but also referred me to another expert there and then and within a week I was diagnosed and treatment started. If I would have waited for things to get worse, who knows.
Maybe it's a way to go?
It has not been an easy road, I had to accept that eventually. There is still some grief, very little, for my old, healthy life, or maybe it's anger when I think of all the energetic dreams I had and the cut to my salary and subsequently, my pension, because I had to cut my full-tim to a part-time job with many sick-leave absences. But I have found other ways to live a creative life, remaining involved with new ways of socialising. Give it time.
You learn so much along the way. Like how to become much, much more assertive and prepared for medical appointments. Sometimes, it's not enough to arrive with a written list of questions. Sometimes, you need to put your foot down and tell the person behind the computer screen that you do not feel heard or understood. I always ask for and write down the name of the doctor who sees me, I do this in person and politely at the start but I found that this often results in a more personal reaction.
The hardest lesson for me was to understand that treatment of a chronic illness is slow. There are no magic immediate solutions - apart from short-term cortisone in emergencies - and the medications available for autoimmune diseases take their sweet time to build up in your body before they become effective and once they do, it's in slight, tiny steps. But they do work, in a way whereby you look back one day and think to yourself, Oh, I think this is better, - what I mean, these drugs don't work like a painkiller that numbs a headache within 30 mins.
And biologicals have made a huge difference in my case. So there's hope for you.
Thank you so much Sabine for this. This is much appreciated 😊 that's useful to know about the medication and how slow it can be to feel a difference, which I will keep in mind when I start it. I just have to learn to be patient and build up these skills over time, including being more assertive (which I've always had a tough time with in all aspects of my life!). Thanks for the link, I will definitely check that out.
I'm happy that you got the answers you needed (relatively) quickly and that biologics have made such a difference. That gives me hope 💕 x
Thank you for this... I've definitely felt a similar deflation as I realised that the one rheumatologist appointment and some stronger pain killers is all I'm going to get. I'm still able to work, I'm really grateful but the activities I have to do to manage my pain make it difficult financially and time wise to keep up. Not to mention hormone changes and cycles which really impact me.
Thanks Maggy. Deflated is the exact feeling! Just a kind of hmm now what feeling. Hormones impact me a lot too. It just feels like a rollercoaster being in this body 😌 the hubby and I have gone away in our campervan for the bank holiday weekend. Sometimes you just need to get away and have a change of scenery! Lots of love x
Oh I wish I could come over and give you a hug and chat and tell stories and moan a bit too and watch old Goldie Hawn movies because I know what it’s like, even if I have it differently and yours sounds way worse, but I know and the NHS sounds exhausting to deal with. Can you find a good acupuncturist? I know it sounds like a few little pricks aren’t going to solve the big problems but it definitely helps manage mine… Fly over here to see Dr Dong! big hugs my love ❤️❤️
Thank you Cesca that's so sweet. A movie night sounds so good right about now! I do think I will have to start looking into alternative medicines to help along side the meds, as the pain and fatigue is hard to deal with a lot of the time. I've heard many good things about acupuncture, I will have to do some investigating to see who is recommended near me ☺️ lots of love. Btw I hope your recent procedure went well x
I have SO MUCH to say in response to this one.
Firstly, I have no doubt this will land deeply with so many of us readers. It was my belief when I got diagnosed that the whole point of being referred to a “specialist” was so that they could help me get to root of the problem and support me back to wellness !!
What strikes me now though is that that was a belief that come from some place else, some other lifetime perhaps. Because I’m seeing a lot of dismissal and resistance around root cause of disease lately. So why did I go all in root cause if this is not the norm? I’m so thankful to myself now that I stayed on this track even though it was brutal to hear that the nhs weren’t going to help me do that.i found another way.
I’ll come back and reply with more after my writing class 😘
Thanks Amber. It's a bit of a scary realisation isn't it. I've found a lot of comfort and wisdom in your writing discussing this same thing. I look forward to hearing more :) have fun at your writing class x
I can’t remember where I wanted to go with my response now but I do want to reflect back a few things. There is so much I can see you’re processing here. I love your husbands gorgeous act of love - with that kind of support, it takes you far. It doesn’t sound to me like you are wallowing in self pity, you are making space for your grief. Something my friend Sheila writes about on here (for her it’s the grief of infertility - as a direct result of her chronic and disabling illness).
We share the same belief “anything is possible”. I know it’s like me telling you what to do which I try my best to refrain from, but I want to encourage you to keep hold of that belief, stay true to it. And about how you know that writing, being of service and community is what you’re here for. You don’t need to have it all figured out. It’s enough to know this for now. And your belief about bringing about change in the world. This is possible. It starts with making space for self. And believing.
I have more to say but that will do for now😆
Ah Amber thank you so much, you always seem to know exactly what I'm trying to say and what I need to hear for a much needed boost and reassurance 😄 I think I just needed to hear that there is still something to keep fighting for and to look forward to in life really. Something to give us a little bit of hope that life won't always be about illness but good things too ☺️ x
It was a big thing for me to jump on the Facebook bandwagon (as was back then) and share my photos of the year in 2018. Following suit of everyone else’s.
It was a huge surprise for me to realise amidst the catastrophe of losing my dad, my health, my income, my career and receive the confirmation that no one was coming to my rescue, aid or support (other than me) that there was some joy and hope and magic, freedom and choice too.
I often say to really anyone who is listening, that the wins are only there when you look for them. And they can still be found even when dealing with the debris of what once was your life.
Yes and the grief keeps changing. I thought I had it nailed and sorted. Then the fatigue has hit me again and I’m side swiped (again). I have only had enough energy to write notes about it of late rather than a full blown post. The joys of chronic illness keep on giving, and the only reason it has come back is because I HAVE HAD TO WORK. I love my new job but I now acknowledge the only reason I thought the chronic fatigue had gone was because I had total control over my time. No I don’t I’m screwed it seems. Work or be healthy ? Interesting choice I’m hoping to not have to make. Balance that will sort it all out …right?
I feel you! The grief comes in waves for me too, a flare up or hormones can bring it out all over again.
I'm sorry you're having a difficult time with work/energy balance. Its such a hard balance to achieve, but hopefully one you can find 🤞💕 it's good that you enjoy your new job and hopefully the people you work with are understanding? I think that goes a long way. Sending you hugs x
hi - i will join you at the top of the mountain because life does throw shit at you and i feel angry when other people seem to have such an easy life and it is very easy to question yourself "Why me? what have i done wrong to deserve this?" and then if i go for a walk and i know a particular person and know never will they ask how i am feeling, i tend to cross the road. Someone at your mum's work said that the human being will wallow in self pity (and you are allowed to by the way as its the healing process again) and then you feel sorry for your self and fee angry with the world and you realise that its not use comparing your pain with someone else as each individual is living with their own pain - its not a competition after all but its bloody tough when life throws these rotten things at you. Is this when you turn to religion? even though does that help you. Can you paint a picture to show your feelings? does that help? One good thing i know which will make you laugh is that your dearest mother felt blessed when she met your father and when they went to Crete, she wasn't worried about body shaming at all. The story goes is that they both lied in the sand - topless - so she had that moment of freedom - that beautiful feeling - mind you they fell asleep and woke up just in time when the tide was coming in and about to take their clothes - eek!
Is there a programme you can join where you phone someone up who's on their own -' and just cht to them - sometimes helping someone else who is lonely gives you a buzz so you could go down that route every now and then but you are allowing to feel angry with the world.
once i was in such despair i just screamed out loud and someone said i shouldn't frighten anyone else and could i not do it somewhere else - f''ck them I thought - they've obviously never been 'there' before. Can you get those special 'virtual reality' goggles and whisk yourself away to a lovely place? I would get one of those reclining chairs and sit in it and imagine you are in a plane and then put the air conditioning fan on and go for a journey and stop for a drink etc and 'whisk' yourself away - if its one of those chairs that throw you out at the end - that could feel whacky and great -
Would one of those rag-doll cats that stay inside all the time, sitting on your lap, make you feel better now any then as I think its about trying to 'love' something else - just briefly which makes you feel you have a blessed reason to be in this life.
Have they given you anti-depression pills to ease your mental and physical pain? have they offered you the cannabid oil? yes, its not the answer but its little steps, like you say, that help you each day.
Are there any charity groups close by who would pick you up in their specially adapted mini buses and take you on a trip ?
There are special places where you can go into the rooms and throw axes to get rid of your anger, sadness, disappointment, etc so it does seem to be the norm that lots of people want to let their anger out and i think that is a good idea.
Would you get better treatment abroad? - trouble is that it all costs money doesn't it - which means it makes you even more angry. Look at Katie Price?
Are there any institutions which want you as a 'guinea pig' in a nice way ? Would you want to be part of a science project?
it is normal to have regrets and mourn the time when you should have been more selfish but it is in your nature to be kind and thoughtful so can you learn to be more 'selfish' sometimes?
I think it is a good idea to talk to yourself 'hey Amanda - you're doing really well today - well done - now go and make a tasty soup?' The human brain is so complex that i believe you can trick it every now and then - I believe we all have a Jekyll and Hyde in ourselves and you are allowed to be either cos you are a human with feelings .
you are writing very informative blog entries and your natural writing stories flow very well and they come from the heart and show exactly how you are feeling, etc so I for one hope that the person who teaches you to write doesn’t change your passionate way of writing as you have a ‘unique style’ which is not only informative but is from the heart and is very interesting and moving and easy to read and has your own personal touch to it.
I heard someone else on the radio talking about her blog and said it empowered her and made her accept the situation and made her feel stronger so is this happening to you?
When I was a child there was an actor called Jack Warner from a TV programme called ‘Dixon of Dock Green’ and I am sure he used to have bees stinging him on purpose to release a venom to help him with his arthritis, etc – have you looked into this? You never know, maybe insects and their substances in stings could be interesting - Mother Nature eh?
Can you adapt one of your windows into a 'balcony' so you can go out onto it during the day and have a chair to sit on and feel the sun on your face or watch people walking by so it becomes like a walk without the angst and becomes a 'go to freedom' place? is that possible ? and in the evg you can sit there for a moment and look at the stars? Can you ask your dear husband if that's possible?
keep going Amanda as I am sure people reading your blog feel 'better' even if for just one minute and when they write to you. they hopefully give you a few mins of peace too. xxx
Aw I like hearing about mums moment of freedom! I think that's what life is all about. I'm trying not to look too far into the future as that gives me anxiety, but just trying to live in each present moment, find the joys where I can. One foot in front of the other at the moment. I like all of your suggestions. I think it is all about layering up stuff that can help, there is no one quick method to feeling better but lots of little things.
Thanks for your kind words as always. Writing has really been helping and if it can help others too that's a huge bonus 😊 lots of love x
Amanda, I felt every word of this. Perhaps these lines from my latest post help in some small way:
“Despair washed over me for the first few years, and I look back on it with understanding and compassion. It was normal to grieve the way that I did. It was healthy, emotionally. It was necessary. You cannot fake your way to a feeling of hope - that’s called toxic positivity. You have to experience the depths in order to call up the courage to believe in the possibilities.”
You’re right where you need to be. Let it happen 😌
Wow Amy that perfectly sums it up, I love this, thank you for that. I think I just need to allow myself time to feel the emotions and just trust that I will come out the other side in due course 💕 x
Your post resonates hugely with me. And I feel so angry when I read about your awful experiences with the NHS. If I could I'd beam you over to Germany so you can get a more immediate treatment.
I was diagnosed after a period of four months. In that time, I did a lot of research myself and had a fair ideas what was happening. My work as a translator/editor of medical manuscripts gave me access to excellent data and very helpful researchers - in other fields but medical experts nevertheless. When I felt pretty certain, I made a private outpatient appointment with one of the experts I had read about. This involved having to pay for it myself but a free referral through the statutory health insurance was not on the cards at the time. This expert examined me very thoroughly and confirmed my fears but also referred me to another expert there and then and within a week I was diagnosed and treatment started. If I would have waited for things to get worse, who knows.
Maybe it's a way to go?
It has not been an easy road, I had to accept that eventually. There is still some grief, very little, for my old, healthy life, or maybe it's anger when I think of all the energetic dreams I had and the cut to my salary and subsequently, my pension, because I had to cut my full-tim to a part-time job with many sick-leave absences. But I have found other ways to live a creative life, remaining involved with new ways of socialising. Give it time.
You learn so much along the way. Like how to become much, much more assertive and prepared for medical appointments. Sometimes, it's not enough to arrive with a written list of questions. Sometimes, you need to put your foot down and tell the person behind the computer screen that you do not feel heard or understood. I always ask for and write down the name of the doctor who sees me, I do this in person and politely at the start but I found that this often results in a more personal reaction.
The hardest lesson for me was to understand that treatment of a chronic illness is slow. There are no magic immediate solutions - apart from short-term cortisone in emergencies - and the medications available for autoimmune diseases take their sweet time to build up in your body before they become effective and once they do, it's in slight, tiny steps. But they do work, in a way whereby you look back one day and think to yourself, Oh, I think this is better, - what I mean, these drugs don't work like a painkiller that numbs a headache within 30 mins.
And biologicals have made a huge difference in my case. So there's hope for you.
You probably know about this medical database: https://pubmed.ncbi.nlm.nih.gov/advanced/
This is where I can spend hours and find out stuff.
Take care Amanda, your life will still be wonderful.
Thank you so much Sabine for this. This is much appreciated 😊 that's useful to know about the medication and how slow it can be to feel a difference, which I will keep in mind when I start it. I just have to learn to be patient and build up these skills over time, including being more assertive (which I've always had a tough time with in all aspects of my life!). Thanks for the link, I will definitely check that out.
I'm happy that you got the answers you needed (relatively) quickly and that biologics have made such a difference. That gives me hope 💕 x
Thank you for this... I've definitely felt a similar deflation as I realised that the one rheumatologist appointment and some stronger pain killers is all I'm going to get. I'm still able to work, I'm really grateful but the activities I have to do to manage my pain make it difficult financially and time wise to keep up. Not to mention hormone changes and cycles which really impact me.
Sending you love and support 🩵
Thanks Maggy. Deflated is the exact feeling! Just a kind of hmm now what feeling. Hormones impact me a lot too. It just feels like a rollercoaster being in this body 😌 the hubby and I have gone away in our campervan for the bank holiday weekend. Sometimes you just need to get away and have a change of scenery! Lots of love x