What do you like to do when it is sunny?

emmarenshaw

I like to read, listen to music, have something cool like an ice-pop or sorbet. Really enjoying this sunny weather.

Topkitten

Sunny days are worse for me than cooler ones, the heat causes the pain to get worse. Being housebound and virtually chair bound to a recliner just makes sunny days miserable. It isn't just the pain though as if I was in appropriate accommodation I could at least go outside in a wheelchair but I cannot get any support from the local health and support services. I did hope to move into a better area but that was killed off by incompetent GP's and equally incompetent Social Services. Just waiting now for the soon to happen day when I can't leave the chair at all and will starve to death.

TK

steve23965

I love the hot weather. Though previously i would go out walking or even a drive to local beaches, due to my illness i cannot walk far or even drive to beaches. I suffer with multi level ddd. Which has and still is causing problems with my arms and left leg. Vision sometimes blurrs in my left eye.
So my enjoyment is now confined to getting to garden to enjoy it.

Chloe_Alumni

Thank you everyone for sharing!

@emmarenshaw, I am with you there, you sound like you have it all sorted!!
@Topkitten, I can understand you not enjoying the sun if it impacts on your health, hows the rainy weather for you?
@steve23965, I hope your garden is a nice and relaxing place for you! I do love sitting outside when I can

emmarenshaw

@Chloe_Scope I try. Hope everyone has a good week. 

Chloe_Alumni

Thank you @emmarenshaw, you too!

Topkitten

@Chloe_Scope, only hot weather causes problems which I assume is due to sweating. Contact with the nerve damaged areas is extremely painful so I always try to wear clothes that don't touch the skin. So far its mostly the lower right leg but every couple of months it changes and expands, wont be long before it's both legs. I usually spend all day in a dressing gown though if it gets too hot I have to change into shorts.

TK

April2018mom

I love being in the garden with a cool drink and a book. Today we went to the beach. 

Chloe_Alumni

I hope today isn't too painful for you @Topkitten! 

Topkitten

I was going to put a lengthy reply but perhaps it's better elsewhere. All I will say @Chloe_Scope is that every day is as painful as the previous day except when my condition gets worse and then my only hope is that the pain won't go up too much this time. Next change is due in the next week or so.

TK

Chloe_Alumni

Sorry to hear this @Topkitten, been in pain is never pleasant. Like you said, I hope it won't go up too much for you. We are always here if you fancy a chat

April2018mom

@Topkitten

Sorry to hear that. If you ever need to talk I’m here. What pain medication are you on? Are you seeing a pain management specialist or not? Pain sucks. I have had terrible neuropathic pain in the past so I can understand what you are feeling now. Please also consider seeing a therapist. What did the doctor say? My pain specialist referred me to art therapy which helped me immensely. It distracted me temporarily. I was 11 years old at the time of diagnosis. Eventually the symptoms disappeared although now I think they are back. I stopped my pain meds. 
Perhaps that is a option to try too? It is worth a shot. How bad is the pain now? 

Topkitten

@April2018mom, ty for your comments. Pain levels are high constantly due to nerve damage and reclined in a chair most of the time allows it to drop to 4/10 unless it's very warm when it goes to 5/10. Standing sends it up to 8/10 and walking just a few steps shoves it to the maximum (10/10). I used to be on Fentanyl patches but when I hit the guideline limit (125 microgrammes per hour and usually reserved for terminal Cancer patients) they refused to increase further and dropping behind caused overdose and withdrawal problems as my skin could overcome the limiting factor in the patches. Now I try to cope on Tramadil, Paracetamol, Pregabalin and Nortryptylene but unfortunately, even on a low dosage, I get regular problems with the Pregabalin and Nortryptylene so all they do is just take the edge off the pain and do not deal with the core problems. In the past I have been on both Buprenorphine and Fentanyl patches, Cocodamol, Dihydrocodeine, Oramorph, Duloxetine, Amitryptylene and Gebapentin but all have either been outstripped or caused problems. I can only really control the pain with my current medication if I stay in the recliner chair 23 hours a day or more.

TK

April2018mom

Are you seeing a nutritionist? They can help you stay healthy and strong. 

pollyanna1052

I sit in the garden and paint rocks. Can`t take too much hot sun though.

April2018mom

I played football today. We are about to start rehearsals for our annual Christmas play in two weeks time. Parts will be given out tomorrow so everyone will have plenty of time to learn their words properly. I am beginning another search for a guitar teacher as well. I also want to start French lessons again.