PIP, Defined by others by your disability

[DNE92]

Hi

Well I duly opened the letter from the DWP - what decision would they be giving me - none. They just wrote to say we now have enough information to make a decision. Oh goody just another 4 months to go then?

Today I should have been at the TRANSMIT festival in Glasgow and I had bought 2 tickets for me & hubbie. I was soooo looking forward to it. Wasn't planning to party late into the night. I only chose a Friday ticket as I'm a BIG Rag 'n' Bone man and he is playing at 4pm. But Glasgow holds bad memories for hubbie but they relate to me because basically I needed serious treatment for my mental health disorder over there. So hey I have some nasty experiences over my treatment. So last night I burned the tickets.

This morning my daughter said hey Rag 'n' Bone Man is on tour. He's at the Glasgow Academy. So hey ho that's out the window. Hubbie says he'll go anywhere else but I know that's a lie because every time we go anywhere he just starts talking about seizures, how's he going to get me to the car etc. I just WANT A NORMAL LIFE AND FIGHT HARD NOT TO LET THIS FND RUIN AND HOUSEBOUND ME. But is it ever going to get like that for me. The festival would have so enlivened me and let me be free and normal and not been seen as something to pity. Stick your pity where the sun don't shine.

Sorry about the rant but not only is FND eating away at my life my family are letting it or even encouraging it.

Oh and when I say I'm tired I'm sure you'll have heard said back to you, "well so am I". Well great let's swap shall we. You have FND fatigue and I'll have yours. Great deal.

Now hubbie mentioning holiday in October. Abroad to get a bit of sun over this milk coloured body - I swear the sun bleaches me even more white. But here's the surprise I'm not going to go. My decision. Does anyone know of good travel companies that can deal with disabilities? I'd rather go alone and meet others dealing with their challenges with a good sense of humour and a large glass of your favourite tipple.

Sorry I know people on hear probably don't have any support and would give me a damn good telling off but having a family and an over-protective other half and kids is not what it's all cracked out to be.

So I'm off to put my headphones on and burst my eardrums listening to -you've got it - Rag 'n' Bone Man. Let's say a big hello from my house.

Cheers

Lou

[andyglasgow2016]

Hey! That's a shame re the festival you couldn't go to.

With regards to holiday... I used Thomson, they have a good procedure in place where you list all your requirements on what you need with hotel etc and they sift through their database of hotels and match you to Walmart is suitable.

Hope that helps.

They advise you give a 3 month head start so they can do it properly as we know last minute just doesn't work with disabilities.

My hotel I changed to in Cyprus was very disabled friendly with ramps etc around so I would def go back again

Trust you're doing well otherwise!

[Ccaldwell]

I have just found this great resource online. It has a fantastic slide for Family and Friends at about the 45:20 minute mark that may help you and your family change the way they think about FND and living life: youtube.com/watch?v=bfLv5jM...(Not working as expected?)

I have already shared this with my very important people, as I sit here on a beautiful sunny day not able to get a ride to my local Music Festival!

[DNE92 in reply to Ccaldwell]

Thanks for this - very informative especially about avoidance reinforcing the disorder. I need to get the message through to hubbie. The Glasgow Festival and the guy I really wanted to see Rag 'n' Bone Man was described as sensational. Well there it is really. I've been in bed all day - the whole disappointment has just enveloped me. I look at pictures of the event and it wasn't so much about the singers but the festival goers - just living life and having a fun day.

Lou

[Dave_1]

Hang in there, Louyse. Most of us have been ridiculed, called faker, liar, told it's all in your head, your an attention seeker or need to see a shrink.

The thing is YOU MUST BELIEVE IT'S REAL and never doubt it. This is the hard bit, when people undermine your belief in your diagnosis as PIP do, family, friends and even some medical "professionals".

You are right about "me time". Try to find some thing that you can go to regularly, that is totally for you, somewhere you can be yourself. Doesn't matter if it's a coffee shop, library morning, local pub with a music night. Or just go to a swimming pool, sauna or relaxation class.

There are people who would recognise FND Fatigue, but they have a "RECOGNISED LABEL". Those with MS, Cancer, Myasthenia Gravis, lots and lots. Would those who play down your tiredness want to trade places with them, I think not.

Take care and enjoy many more concerts, what about Seasick Steve. lol

[DNE92]

Thanks. I've got through to hubbie and myself and my daughter went out girly pampering yesterday in Edinburgh. It was great. Get home, hubbie really pleased we had a good time and has calmed down alot about the danger of me being on my own in case I hurt myself more than having a seizure. I hadn't had any seizures for 5 consecutive days which is odd for me as they are daily. So I thought hey I'm cured - NOT. 2 bad seizures as I was preparing for bed. Still in bed as tired. But I'll keep fighting.

Cheers

Lou

[cgarff]

Lou, I'm sorry you didn't very to go hear the band you like, getting to do things you enjoy is important, especially with what we have to deal with. Lately I have been struggling to do some of the things I like to do.. No inspiration, tired, and always on the go dealing with the family, sometimes it is nicer when kids are in school (feel guilty about that).

Last night my daughter wanted me to go to a class on functional medicine and nutrition (i think) and I wanted to go. But about an hour before or so I got really tired and started falling asleep, I woke up in time, however I am learning that a bad indicator for me is when I lose my voice completely that bad things may be on the horizon. I wrote on a notepad to my husband that I didn't trust myself, and that I didn't feel it would be good to go. Of course I let down my daughter, but about a half an hour later when I would have been at the class I was called upstairs to have dinner, I slowly made my way up the stairs, but when I got to the top, I had to sit down. Things were off.. With in a minute or two I started seizing. I ended up having I think about 10 seizures, struggled to breathe, and even started choking on my own spit. Not fun at all. My daughter was not thrilled about missing the class, but there was nothing I could do. Fortunately for me after about an hour I was able,to function, and was able to sit down and draw until I went to bed. This stupid disorder has a good way of messing things up doesn't it? Best of luck to you. I hope you can get some time away to relax.

Cheryl