I don't know what's wrong

riversong234

hi I am used to being part of online communities and feel supported with stuff like my mental health. My physical health declined last september and I have been very isolated in this experience. 

In 2020 I started to become unable to walk after a few minutes, my lower back on the right side would get tight, moving to left and I would be a block of tention. This would normally bother me once or twice a year and would go away after a day. It was constant. I started to walk with a stick and the issue went away. I would often fall, and it took a long time to get 'back to normal'. September comes and my walking declines, I have to use the stick again. I also become so tired, I can't cope, I'm constantly sleep and never really enaged, falling asleep during conversations. I can't go to the cinema or theatre because I fall asleep. Then I cough all night, and often in the day and lose my voice. 

I have been diagnosed with sleep aponea and given a machine, and I'm doing better but not great. I use two walking sticks and struggle to stand without them. My voice is returning but the sad thing is I'm a singer and my singing voice is struggling. I had a camera in my throat, and there is no damage but I have lost big gaps in my range. I was returning to performing before all this happend, and my health ruined it. 

I lie awake at night worried that I will never get better. I think I have undiagnosed ME, as this all started when my Nan died. It was really traumatic tbh, and I know stress can trigger ME. I also sprained my ankle when I fell over one time and it never got seen to and my foot still hurts. 

I feel a bit broken tbh and some day hopeless. I am working VERY hard to still be an artist and hold down a job. I didn't think I belonged in the disabled community but I have leant in and accepted help, and got myself a sunflower lanyard. The biggest change is I ask my partner for help.  Just stuff like 'I left my charger up stairs could you get it' that make life a bit easier. I also sit while I cook or will sit anywhere in public even on the floor, if I need to. 

Thank you for reading. 

Lou67

@riversong234
Good afternoon and lovely to see posting on the forum.
Im so sorry you are dealing with so many things, but great to hear you’re still doing your art work.

I still find it hard at times accepting how my life has been affected with different things wrong with my health, but what I  found is this great forum to meet wonderful people and always have someone to chat with.

Take care ❤️

Cher_Alumni

Hi @riversong234 and welcome to our online community, thanks for telling us some of your story. 

Reading what you've been through, I'm not surprised you're feeling a little down and weary. Living with a condition, undiagnosed or otherwise, can really impact our sense of identity. And as a singer, that your vocal range has been impacted, must be hard. Do give yourself permission to feel those emotions when they come, it's understandable and change is difficult.

It's really positive that you're learning into the disabled community though (us included), and small adaptations to daily life can make a significant difference. Have you ever spoke with your GP about these emotions and exploring the possibility of M.E.? And also, would grief counselling around the loss of your lovely nannan help possibly?

And yes, do communicate things to your partner. I'm sure they'll want to support you as much as possible, so rather than struggle privately, lean on them too 

Please let us know how you get on, and visit anytime. 

riversong234

Thanks Lou, yes it took ages to accept there was even a problem. Cher thank you, I'm having test done but I had to move GP (because I moved) and it's taking ages so all the right things are happening it's just taking forever. I am also in the process of getting mental health support. 

Lou67

@riversong234
I hope it’s not to long till your sorted at your new doctors, glad your getting support with your MH too.

❤️

MW123

Hello riversong234. 

You are certainly going through a difficult time.  I  suffer from severe chronic fatigue, and understand the limitations it imposes on your daily life. The sensation of your body shutting down, forcing you to sleep, is all too familiar. When people inquire about what my condition feels like, I often describe it as a car running out of fuel, where progress becomes impossible until you refuel. I always feel refuelled  after a nap or a couple of hours sleep.

In terms of my sleep pattern, it is no longer conventional as I find myself dosing off at the most inconvenient moments.  Over the past six years, I have had to adapt my life, including my job, to accommodate these circumstances.  I also experience considerable pain due to my spinal stenosis, which makes walking and sitting for any length of time challenging. 

I understand that stressful situations can trigger ME but it is crucial for your GP to investigate and eliminate all other potential medical conditions that might be contributing to your symptoms. 

It is good that you have reached out for help from your partner. Recognising the need for assistance when it arises demonstrates strength.  It is important to acknowledge and give yourself credit for the tremendous effort you are exerting to maintain your identity as an artist and fulfilling your job responsibilities, despite the obstacles you are facing.   Take care MW123

 

riversong234

Yes my GP is rulling out other stuff and getting sleep apnea under control first. Its just I have suspected I've had sleep apnea for years, and then suddenly it's effecting my life so badly? I'm skeptical. yea its been a lot becoming so ill in such a short space of time. I describe my bad days like someone woke me up at 4am and now you want me to do stuff. Obvs I'm not pleased you are in the situation you are but it's so great to hear from someone who I have stuff in common with! I have never reach out to the disability community (I'm a bit busy with the LGBTQ one). No one gives you a certificate saying 'you have a disability now'. I realised I hadn't been physically 'normal' for ages and had no idea if or when I would get better so just started saying I was disabled. I'm a bit nervous about saying something offensive or wrong, and still feel like a 'tourist' like maybe I will get better so should I even say I'm disabled? But yea on and off its been 3 years with it getting worse since september last year. I am trying to implement some change so I dont get v sad on the year anniversary , I will be able to see chnage a progress. 

L_Volunteer

I guess it is up to you what language you use to describe yourself @riversong234 - what resonates with you the most and what feels comfiest for you. How are things going for you more recently?