2348 replies to this topic

[Lovey]

Lots of light and sound sensitivity continues....trying to just keep going! Setting reasonable goals and stay in my lane. Thinking ahead towards more opportunities. Distancing from family. Tinnitus very high. Weather chilly. Got to the library for some poetry books and DVDs. Turning in soon. Thinking of you LDN, hat, iun, mxpro, frog, Gail in heaven🤍💗🍁

[LDN]

Hi Lovey. I really find your posts very inspiring! You have such a wise perspective on life! 

 

Well done for all this great progress you are making! 

 

Very much just trying to keep going myself here!

 

Love and prayers!!

[Lovey]

LDN thank you that means more than I can express.

One day at a time right?

[LDN]

Yes exactly!!! 

 

Sending prayers as always my friend!! 

[Lovey]

Hi guys, I'm still alive. Rough going but I remain in Christ's protection and trusting the process of healing. Takes time and is often very painful. Good is to be found every day. Hope you're each doing well please say hello 😊

[fishinghat]

Hello Lovey.  Our heart and spirit rests with you at all times. Just keep holding on to the Lord.

[invalidusername]

Was just saying that to LDN the other day. There is beauty and goodness everywhere if you just stop and look... you will always find it

[LDN]

Hey Lovey! We are in this journey together! We are safe in God's hands! Healing is so painful at times as you say, but at least we have Christ! You are so brave my friend!

 

Bumpy at bit for me too right now! 

 

Sending lots of prayers and love! 

[looneytune]

 

Firstly, thank you so much fishing hat! That was incredible kind of you to give me such detailed help! 

 

So unfortunately I think the pressure of the last 8 weeks has taken it’s toil on me. I’ve fallen into a really bad depression. The last time I felt this unstable was when I was hospitalised 5 years ago. I’ve started to feel suicidal for the first time properly for a long long time. 

 

I’ve mentioned I’m recovering from lyme disease, but I also have ME. I’ve been treated for these really well over the last year and a half and I’m improving a lot. I’m scared if I get hospitalised this will ruin my momentum. When I mentioned going into to hospital to my doctor he said it would mean when I come out starting from the beginning again. This thought terrifies me. At the moment I’m taking vitamins, have an infrared sauna every day, an epsom salt foot bath and get osteopathy once a week for the ME. My ME treatment lasts another year and I’m so stressed about not being able to finish it. I’m still very limited in what I’m allowed to do physical, as recovering from ME is about taking things slow. This time 2 years ago I could barely walk, so i’ve improved a lot but still a long way too go.

 

I just wish I had never come off the cymbalta since it keep me calm, stable and could just focus on my physical recovery. I felt like my body couldn’t take them any more, my testosterone had dropped and I wasn’t really feeling things. These factors plus the fact my doctor suggested the cymbalta could be making my physical recovery slower meant I decided to come off. Man I regret it now, but I realise you can’t live in the past.

 

My close family have been amazing support, but I can see it’s tough for them, that’s part of the reason I want to go hospital to give them some peace. They’ve noticed i’m panicking a lot at the moment, which is not like me. Also they’ve mentioned huge mood swings. 

 

Fishinghat I followed your advice and went onto 10mg yesterday. I would have had no idea what to do, so thanks so much for explaining! My thinking now however is to get back on 60mg straight away to stop me feeling so unstable I have to go to hospital. I may then go back up to 120mg. Then get through this last year of ME treatment and then come off really slowly. I will hopefully be able to properly exercise then, so that so make it easier coming off. 

 

It weird though because coming off the cymbalta has just made me feel so much stronger and healthier, the best I felt for years. So on one hand it feels mad to go back on it, but at the same time I’m just so panicky, stressed and sacred and do feel suicidal at times. 

 

One last thing I’m on clonazepan 0.5mg twice a day, would I have to stop this to take clonidine?

 

I’m really sorry for such a long post but felt If would good to give you more detailed picture of my situation. Thank you so much for this platform and I wish you all the very best on your own personal journey! 

 

 

Peace

 

5 years later....sorry and hope you are well again 

 

It was the mention of Lyme's AND ME that stood out......are you in USA /UK?

 

There is such an overlap in these two illnesses that any of the symptoms could belong to the other disease!

 

My wife has either Lyme's/ME/Fibro  all 3 share the same symptoms

 

Years ago my wife discovered a two inch circle on her lower leg, not a bullseye just the 2" circle. Stupid doc said it was infected dermatitis.

 

For years we have been wondering if in fact it was Lyme's (she's a florist of all things!) but typically they say the rash disappears after 6 weeks on average and my wife's rash was still noticeable 1 year later so that leads me to believe it was NOT Lyme's IDK........trying to get a test for Lyme's in UK is not really any good

 

Hope you are good

 

John