I keep going back and forth. I feel guilty and insecure about posting for support.
I'm so overwhelmed.
There's lots of changes and unknowns and nothing feels grounded or safe. I don't even know my own body anymore.
I'm panicky and scared and I just don't know what to do with myself.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
Since last year, I’ve been having spouts of my back being in absolute agony which seemed to trigger sudden weakness in my legs. They would struggle to weight bear and be really unstable. It would last a few hours or a day. My right leg has remained pretty weak but I could walk unaided or be fine with my walking stick.
I wasn’t sure what was causing the pain and weakness but I just ignored it.
I went to my weekly exercise class a couple of weeks ago and towards the end of the class I suddenly felt really dizzy and sick. I was struggling to co-ordinate myself and my legs were like jelly. I tried to make my way home but I felt awful and was worried about passing out so I called my wife.
The dizziness and nausea lessened but my legs felt weak and unstable. I was relying heavily on my walking stick.
I went to therapy the next day feeling very unwell. I was exhausted, dizzy, felt very sick and weak. My legs were really struggling. My therapist noted that I looked pale. During my session I got upset and tried to get up but my legs just buckled and I fell over. I needed my therapist and my wife to help me get to the car because I just couldn’t stand up, let alone walk.
I saw my GP, who was very concerned about the weakness in my legs. She sent me for a back X-ray (which came back clear) and referred me to the musculoskeletal team for an MRI to make sure it’s not a spinal issue/injury. She said she thought it was a good idea to go to A&E but knew how stressful that is.
We called my GP on thursday because I had been in so much pain. She sent us to A&E. At the hospital they gave me stronger painkillers, did another back x-ray (again, it was clear) and sent me for a CT scan because I've developed tremors, numbness and I was epic failing their examinations apparently. It came back clear but they wanted my GP to refer me to Neurology which she has.
TLDR; My legs have stopped working, I'm in constant horrible pain, no one knows what's wrong and I'm waiting for loads of appointments.
I'm also being investigated for Chronic fatigue Syndrome and have an appointment regarding that in August.
Therapy is rocky and there's changes coming that I'm anxious about.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
That all sounds very scary I know what it’s like when your physical health is playing havoc.
Appointments though understandably stressful are a good thing I feel it means people are taking you and your symptoms seriously and are going to work hard to find the cause and therefore potentially a solution.
Sorry I don’t have anything more helpful to give right now.
Love and if wanted hugs.
'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'
['There is only one thing we say to death. Not today'.']
'We are each our own devil, and we make this world our hell.’ – Oscar Wilde
‘It’s hard to dance with the devil on your back.’ Sydney Carter
Yes you're right about the appointments. I guess it's just having to wait weeks and months for appointments while trying to adapt to these symptoms and also, with every clear scan and test I get worried that the doctors will stop believing me and think I'm just making it all up and I'm wasting their time.
I feel really frustrated and sad. I'm not able to do the things I want to do - At home, going out and especially with my son. I feel even more useless and like a burden to my loved ones than before.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
The waiting is frustrating I get that. In the mean time maybe think about a rollerator (I’ll try to find a link in a sec) to support you mobility wise if a stick isn’t cutting it. With a rollerator you can lean on it when walking and sit down on it if your legs go weak. I know you probably don’t want to use one but years ago when I still had better mobility I found it invaluable.
I also know the fear clear tests can provoke because you know your symptoms are real. In my experience they go to nth degree to find out what is going on and worst case scenario they may describe it as a functional disorder which is a mixture of psychological and neurological Not conscious and not your fault. Part of mine initially turned out to be functional in that subconsciously I was protecting an unknown broken hip which indicated a bigger bone related problem.
I know it’s frustrating not being able to do what you want to do however hollow as this may sound if even temporarily you will learn to adapt. My wheelchair was a big learning curve then when the bone issues spread to my shoulder and I had to switch mostly to electric wheelchair I had a bit of a melt down but learnt to adjust. Im sure your wife will help you.
Hugs gently.
'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'
['There is only one thing we say to death. Not today'.']
'We are each our own devil, and we make this world our hell.’ – Oscar Wilde
‘It’s hard to dance with the devil on your back.’ Sydney Carter
Wow, thank you.
We have a little fold up wheelchair because I've been really struggling to walk more than a few minutes and we agreed it would be a good idea so we can go out to the shops or for a walk/day out with little one and not have to worry about me being in too much pain or my legs giving out.
Like you said, I've been learning to adapt. I get around the house with my stick and make sure I have a chair in each room. Thank you for the link. I'm going to keep it saved.
Thank you also for your words and validation. it really means a lot.
I'm a bit steadier on my feet today which feels great. I'm still in a lot of pain though.
I'm struggling a lot with dissociation. Everything has been feeling not quite right. My surroundings and the people around me feel altered or distorted. Just 'off' and it's making feel very panicky and unsafe.
It's a horrible feeling.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
It sounds like you’ve planned out your hone really well.
No problem :)
I’m glad you’re feeling steadier but so sorry you are in pain.
With regards disassociation and so on have you tried going back to basics and focussing on the five senses to ground yourself eg touch something soft or smooth and focus on the texture if you’re having a cup of tea try and smell it as you taste it as you eat try and linger and focus on the taste of each bite and so on.
'Never forget what you are. The rest of the world will not. Wear it like armor, and it can never be used to hurt you.'
['There is only one thing we say to death. Not today'.']
'We are each our own devil, and we make this world our hell.’ – Oscar Wilde
‘It’s hard to dance with the devil on your back.’ Sydney Carter
Struggling to focus as I write this. I'm feeling overwhelmed and my head is jumbled.
I'm trying to manage.
I want to get better, both mentally and physically but I feel like I'm running out of time.
There's so many things I want to change.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
I was diagnosed with CFS/ME a couple of weeks ago. My second Covid jab seems to have triggered a flare, just as my first one did. I have little energy but can't sleep, I'm dizzy and nauseous. The last few days my muscles have been cramping which is so painful.
The CFS Consultant suggested I see a Rhuematologist about the possibility of have Fibromyalgia but I don't have the energy to see anymore doctors yet.
Trauma stuff and dissociating is really impacting on day to day. Things feel very blurry.
My therapist and I have talked about working on grounding and soothing/calming the nervous system when it's in a state of hyper/hypoarousal (I seem to flit between both) and it's trying to workout what works and what doesn't.
Also listening to the other 'parts' and tolerating distressing emotions, plus working on feeling safe in the counselling room.
It all feels like a lot on top of family and home stress, as well as trying to get my life back after it pretty much being obliterated thanks to Covid.
If you read all my ramblings, you're a hero and I thank you!
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
I'm sorry you have health issues as well. It's so hard.
I guess I'm trying to learn what helps when I'm stressed and distressed but all I know is to resort to self destructive behaviours to numb myself. Now, I need to learn to tolerate intense, horrible emotions, memories and stress and I don't know where to start.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
I guess I mean learning to tolerate emotions relating to trauma - Learning to soothe, ground etc.. We're in the stabilising period of my trauma work before I can be considered to start EMDR and processing memories. My therapist said I'm not in the place yet to start tackling that stuff yet.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
My head is full of voices. Crying, pleading, begging, shouting, screaming - Angry with me because I'm not doing what I'm 'supposed to'. All scared that there are spiders crawling under my skin, that demons are going to torture the people I care about because when I don't follow orders, Panicking that old abusers are going to break into my house or follow me down a side road until I change my hair or hide myself in some way.
Then there's the flashbacks, the memories cycling on repeat that I can't, the dissociation, the memory loss and gaps in my day I can't account for. Not being able to follow coversations without people having to recatch my attention.
I'm desperate for things to change. I've been pushing too hard and trying to make us all process things too fast and now I'm paying for it. I need to learn to be patient I supposed.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
My therapist broached the possibility that some of my physical symptoms may be a consequence of trauma/a psychosomatic condition rather than a physical one.
I told her I was worried that maybe I was making it up. She said my symptoms were real and my body is clearly in distress.
It made me feel quite defeated.
I just want there to be a cause that can be fixed and I can go back to how I was before.
Feeling pretty low about it.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
We don't actually know what's going on yet. I'm still having physical tests. I have my first assessment with the neurologist tomorrow morning. I'm hoping they will tell me the results of my MRI.
I'm feeling pretty low still about it all. I'm worried we won't get any answers. I desperately just want to be like I was before. I was hoping it would be a straight-forward problem that could be fixed (which it might still be) but I'm finding it hard to stay optimistic about it.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
That sounds tough, but maybe answers some of your questions? I don’t know much about that disorder but I hope that it opens the doors to some proper help.
'It's an impossible choice ... I'll just have to hope that when I flip the coin it somehow explodes and kills me.'
"You're not scared of climbing mountains. You're scared that you can't make them move."
Yeah it makes sense. The doctor was really nice. He wants me to have another MRI just to rule out MS. I'm seeing him again in 3 months. He suggested Propranalol to help with the tremors, so I need to call my GP about that.
He said there's a service to help people with FND in our trust but they are really wierd about who they accept. He referred me anyway just in the off chance they take me on.
It's a relief to have a diagnosis but I don't really know what that means for the future.
I suddenly feel really low. I can't pinpoint why. I just feel sad.
Let us go then you and I, when the evening is spread out against the sky, like a patient etherized upon a table
- T.S. Elliot
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