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Feeling frightened

Hi all, My week just keeps throwing things at me and I’m not coping but trying to put a brave face on everyone around me as my dad has been poorly. Had PIP assessment today, who knows what the outcome will be. I was honest and can always appeal if don’t agree. Got back from the assessment and logged back into work to find an email about some training they want me to go on next week. I should be excited training being offered, it just sent me into a complete spin, it is Reading and I live in Hertfordshire. 2 days of really early starts then having yo concentrate. After all this whizzing round thought you need to speak to boss about staying in a hotel. I pick my phone up and have a voicemail it’s from my boss, saying that I can stay in a hotel and can stay the night before and they will pay for my taxi’s to the hotel. I called him back and I said I could do the training. I am now really frightened, going away on my own without friends or family close by to call if I can’t get up, fall etc… What if the fire alarm goes off, do they have processes for people in accessible rooms, not being being able to be independent for myself is really taking its toll on me. I can’t talk to anybody to explain this feeling as they will think I’m being stupid. I did phone the hotel and check they had accessible rooms available which they have. Phoned the taxi company and got a quote for that. I know I can do this and won’t let the MS win, it is still all so new to me and I how I took being able to use my arms and legs properly so much for granted until they don’t work properly. I am feeling really down about the future. Barney

Hi all, My week just keeps throwing things at me and I’m not coping but trying to put a brave face on everyone around me as my dad has been poorly. Had PIP assessment today, who knows what the outcome will be. I was honest and can always appeal if don’t agree. Got back from the assessment and logged back into work to find an email about some training they want me to go on next week. I should be excited training being offered, it just sent me into a complete spin, it is Reading and I live in Hertfordshire. 2 days of really early starts then having yo concentrate. After all this whizzing round thought you need to speak to boss about staying in a hotel. I pick my phone up and have a voicemail it’s from my boss, saying that I can stay in a hotel and can stay the night before and they will pay for my taxi’s to the hotel. I called him back and I said I could do the training. I am now really frightened, going away on my own without friends or family close by to call if I can’t get up, fall etc… What if the fire alarm goes off, do they have processes for people in accessible rooms, not being being able to be independent for myself is really taking its toll on me. I can’t talk to anybody to explain this feeling as they will think I’m being stupid. I did phone the hotel and check they had accessible rooms available which they have. Phoned the taxi company and got a quote for that. I know I can do this and won’t let the MS win, it is still all so new to me and I how I took being able to use my arms and legs properly so much for granted until they don’t work properly. I am feeling really down about the future. Barney[/quote]

Hi Barney Just noticed that no one had responded to your thread so thought I’d help you by bumping it up. I dont know what words to offer you in terms of how you will manage as I’ve never been in this position. You sound fairly upbeat with regards to not letting the MS win which is in doubt a positive. Can you take a mobile or tablet with you that has internet access then at least you can keep in touch with family/friends? 2hrs from home is not a million miles and if needs be soneone could get to you relitavley quickly (hope there isn’t a need though) and I’m sure the hotel staff wouldbe on hand to assist if the need arises. Hope you get on okay & maybe now I’ve replied to your thread soneone else may see it and offer you better advice. I too feel fery down about the future so your not on your own. Good luck Sue xx

Try to stay positive, my friend went through 2 atos assessments, firstly into the work group and eventually into the support group. I noticed if you dont get there first time perservearce although very tough mentally happens after appealing. Remember although sometimes people dont get back to you,the hugs and love will come your way.

Hi Barney, sorry to hear a bit down at the moment. Reading your post you have coped incredibly well so far and I’m sure you will continue to cope throughout your trip. Most wouldnt have thought about phoning the hotel and taxi company in preparation for your trip, speaking to your boss etc. All this on top of a PIP assesment would be out the question for most people, it must have been very stressful. I would advise you treat your trip as an adventure and enjoy it rather than worry about it. Im sure the hotel has procedures in place for emergencies,most do… I’m confident that you can do this no problem and soon you will be looking for an even bigger challenge giving your independance a big boost… Its inspirational that you have done so much so far and I hope it all goes well for you. Mick.

hi barney

i agree with the other replies.

well done you! you survived the pip assessment!

have a word with the hotel receptionist on arrival and mention your concerns, i’m sure they will be keen to help.

carole x

Hello hun.

Seems to me that you need someone to go with you…sort of like a carer…but not really!

It will give you peace of mind and company. It needs to be someone who knows your problems and how to help when things go awry.

But they may not go awry, eh? Have you got someone who would do this for you?

hope the PIP assessment goes your way.

much luv

Pollyxx

Thanks everyone for your replies. I had the weight lifted off my shoulders as was told today the training is cancelled. I felt like the lead had been removed after I was trying to sort out all the forms I needed to fill in was making very stressed. Next time hopefully I will be more prepared and not send me into a spin. It it things like this make me realise I haven’t fully come to terms with the diagnosis. This site is such a great support to me, thanks for helping me with this Barney

Hi Barney, i’m waiting for Atos to call me for my PIP assessment, and the whole process makes me feel quite out of control of my life, and quite low spirited. I wonder if the same is true for you? It’s a real struggle to carry on at work sometimes, especially when many symptoms are hidden and so people don’t make allowances. Is it possible to take someone with you on your training? If not and you really can’t face it, could it be postponed? I hope your PIP claim goes well : )

Thanks Jen

Try to think of the positives. Your work value you enough to pay for training. Your boss is thoughtful enough to realise you need hotel and taxi. I bet - next time - the hotel staff will be kind and helpful. The receptionist is your best bet - they tend to have their finger on the pulse. Training will stimulate your brain in a positive way. You will feel a sense of achievement and independence from having overcome your trepidation. So, next time, PLEASE go for it! xx

Thanks I feeling really down at the moment and not feeling positive. I’m feeling scared at the moment about everything. Fatigue seems to be getting worse. Not sleeping well. Hoping that will be more positive soon Barney

I like the advise too. I am just feeling like I’m heading for a crash, each day I’m feeling weaker. Went to friends for dinner which was good but I just kept feeling like I wanted to be lying down, being in a chair just doesn’t feel comfortable at moment. I was wondering if you were awake. Steroids are a pain for playing havoc with the sleeping. Hugs

hi Barney and Jen

I am up too. Insomniacs unite!

Barney I think you have been given great advice. I was sent on a training course with fellow workers (teenagers). I am ancient and had not done any training for years. I was at school when O levels were around. The course tutor told me I would struggle as I did not have a recent A level biology. Great incentive for me to prove her wrong. Wasn’t easy but out of the 6 of us I was the only one to gain the qualification. so what I think I am trying to say is “go for it” as without trying you will never know if you could have done it. with careful planning it will hopefully be a satisfying experience for you.

Hope Jen you manage some sleep soon - how much longer on the steroids?

Great to hear you are feeling better - onwards and upwards.