living with a chronic condition (part 4)

Careful_with_that_Axe

Invasion I had a very sensible Physio who, when I baulked at aids, said that it wsn't giving in it was managing the things I had to do to save the energy for the things that gave me pleasure. Would it help to try to change your mindset to that about using the wheelchair for College? Well done on going back btw. I agree about saying something about the chairs if they give you that much pain - they will be well used to dealing with people with different needs and - just think - them getting a chair or something comfy for you may well help someone else with similar problems to go to College rather than not be able to as the chair is there iyswim.

BTW I have Lupus, IBS, Mixed Connective Tissue Disorder and T-Cell Lymphoma, age spots and grey hairs *g*.
And I'm usually too lazy to use the smilies so I *g*rin at everyone instead *g*

jazabelle

kassandra wrote: »

Hi Jazabelle, I don't think we've met. I'm sorry if you didn't get a response but that happens to me too sometimes. You occaisionally miss a post in the middle of things but I know it's never done to me on purpose and I hope you do too. I have Fibro, Hypermobility, Chronic Fatigue, IBS and Diverticular Disease. I don't have an alias name. I'm 31 with four children and I've just started college today :beer:

Hello, lovely to meet you! Oh I understand, it's just sometimes it's so nerve-wracking to post, and to not get a response can feel like a rejection. I realise no one means it that way, and I'm sure it happens to everyone, but it does make it difficult to join in sometimes.

Oh congrats on starting college! What course are you taking?

sammy10 wrote: »

I sometimes think it would get less of a reaction if I told them I had leprosy The amount of people who think its contagious is unbelievable :rolleyes:

God, that's so ignorant. People really suck sometimes.

Invasion

Careful_with_that_Axe wrote: »

Invasion I had a very sensible Physio who, when I baulked at aids, said that it wsn't giving in it was managing the things I had to do to save the energy for the things that gave me pleasure. Would it help to try to change your mindset to that about using the wheelchair for College? Well done on going back btw. I agree about saying something about the chairs if they give you that much pain - they will be well used to dealing with people with different needs and - just think - them getting a chair or something comfy for you may well help someone else with similar problems to go to College rather than not be able to as the chair is there iyswim.

BTW I have Lupus, IBS, Mixed Connective Tissue Disorder and T-Cell Lymphoma, age spots and grey hairs *g*.
And I'm usually too lazy to use the smilies so I *g*rin at everyone instead *g*

It's weird, I'm completely fine, and happy using it the rest of the time, I don't even notice people staring anymore, and I have a fab electric one that I use when I'm up to it and for longer trips out/when I need to get around by myself. It's just that this is a different group of people, and I've always loved the fact that at college I appear pretty normal, my crutches are turquoise, and they just seem to put people off less than the disability label that comes with the wheelchair. I guess it's something to think about, but will definitely mention the chair for working

kassandra

sammy10 wrote: »

I know how your mum felt, I get embarrassed by it too and have learnt to my cost that you shouldnt tell people unless you want them to run screaming for the hills. I sometimes think it would get less of a reaction if I told them I had leprosy The amount of people who think its contagious is unbelievable :rolleyes:
Sorry about your mum and thanks for your reply.

I'm still completely amazed that people like that still exist! I mean, where the heck do they come from I'm not quite sure why I rambled on like that about my mum :rotfl: Must just be on my mind I suppose. It would have been her birthday today.

jazabelle wrote: »

Hello, lovely to meet you! Oh I understand, it's just sometimes it's so nerve-wracking to post, and to not get a response can feel like a rejection. I realise no one means it that way, and I'm sure it happens to everyone, but it does make it difficult to join in sometimes.

Oh congrats on starting college! What course are you taking?

Thankyou. I'm doing Alternative therapies which includes crystal healing and reflexology amongst others. I thought it would be good for me to learn so I can try and help myself and others. I'm also doing reiki, for the same reasons. I'm doing beauty therapy because somehow the receptionist talked me into it and I'm doing hair dressing so I can save a few pennies on kids hair do's :rotfl: Three youngest's is expensive enough but DD1 cost's £50 a time :eek: I also wanted to do something that wasn't too taxing on the brain because I'm just not capable anymore I don't think. I started the hairdressing one today and learnt a useful fact already. If you're blonde and your hair turns green when you go in a swimming pool (apparently it only does it when they use cheap carp) on holiday etc, then wash it in tomato sauce.................yes I'm serious, tomato sauce neutralises the green in it. See, there's a bit of science to hairdressing :rotfl:

jazabelle

kassandra wrote: »

Thankyou. I'm doing Alternative therapies which includes crystal healing and reflexology amongst others. I thought it would be good for me to learn so I can try and help myself and others. I'm also doing reiki, for the same reasons. I'm doing beauty therapy because somehow the receptionist talked me into it and I'm doing hair dressing so I can save a few pennies on kids hair do's :rotfl: Three youngest's is expensive enough but DD1 cost's £50 a time :eek: I also wanted to do something that wasn't too taxing on the brain because I'm just not capable anymore I don't think. I started the hairdressing one today and learnt a useful fact already. If you're blonde and your hair turns green when you go in a swimming pool (apparently it only does it when they use cheap carp) on holiday etc, then wash it in tomato sauce.................yes I'm serious, tomato sauce neutralises the green in it. See, there's a bit of science to hairdressing :rotfl:

Oh that's awesome! If you need a guinea pig to try things out, I will volunteer! I have yet to try reiki or crystal therapies. Mixing the two is great idea, people can visit to heal and beautify at the same time!

Blimey - what does your daughter have done?! I hate how much they charge to do women's hair. My grandad was moaning the other day about it costing £8 to do his hair! I was like are you joking, you can't get a trim for less than £30 in town for us!!

I'll remember the tomato sauce tip, thanks!

pipkin71

jazabelle wrote: »

The weather seems to be taking a turn for the freezing, which I don't know about anyone else, but makes my pain levels shoot up.

It's not too cold here at the moment, but the temperature has certainly dropped.

I also seem to suffer more when it's cold, and especially when it's wet and cold

jazabelle

pipkin71 wrote: »

It's not too cold here at the moment, but the temperature has certainly dropped.

I also seem to suffer more when it's cold, and especially when it's wet and cold

It felt freezing here this morning! :snow_grin It got a bit warmer in the afternoon, but it has been cold enough for me to put my slippers on, which is very rare indeed!

Cold and wet is the worst.

pipkin71

kassandra wrote: »

Thankyou. I'm doing Alternative therapies which includes crystal healing and reflexology amongst others. I thought it would be good for me to learn so I can try and help myself and others. I'm also doing reiki, for the same reasons. I'm doing beauty therapy because somehow the receptionist talked me into it and I'm doing hair dressing so I can save a few pennies on kids hair do's :rotfl: Three youngest's is expensive enough but DD1 cost's £50 a time :eek: I also wanted to do something that wasn't too taxing on the brain because I'm just not capable anymore I don't think. I started the hairdressing one today and learnt a useful fact already. If you're blonde and your hair turns green when you go in a swimming pool (apparently it only does it when they use cheap carp) on holiday etc, then wash it in tomato sauce.................yes I'm serious, tomato sauce neutralises the green in it. See, there's a bit of science to hairdressing :rotfl:

You sound busy Kassandra

I wish you well with your studies, and may well start a topic on reiki, as I'm quite interested in that.

arealbasketcase

Hi Everyone

just wanted to pop in and say thank you for the wonderful support and advice you gave me last night.

Sadly my mother-in-law passed away this afternoon which has left us all feeling very sad. In the end it was a blessing.

I have spoken today with several people regarding my mum and I feel a little more prepared for what is ahead. The consultants secretary has arranged a further consultation for my mum, unfortunately not until next week, but at least this time I can go with her and my dad and, hopefully, if nothing else, I will be albe to take in a bit more and be able to help my mum and dad more.

I have also spoken with the thorasic specialist nurse, who very gently tried to explain just how poorly my mum is.

Thank you, thank you, thank you, for being around when I needed support.

I hope everyone makes miraculous recovery and gets all the help and support they need.

Careful_with_that_Axe

I'm sorry to hear your sad news arealbasketcase. Do stick around if you want to or join us in the Crock's Cafe to shoot the breeze. Make sure you take time to look after yourself as well while you are going through all this? It's bound to take it's toll on you. Lots of hugs to you.