Evening all - apologies in advance for the negative post but I’m feeling ready to burst! Having a bad day I think, I feel like there’s so much going on at the moment and today, this evening I can’t cope! 12 mths on still trying to cope/ hope that I’ll get better after suffering a major relapse leaving me with very limiting mobility in my legs, although i can walk a little after 5-10 min that’s it and I have to sit for a good hr plus before attempting anything else, then there’s the bladder and bowel incontience which just seems to rear it’s ugly head when u could really do without it! To think 12mths ago I was fine! On top of this, my much loved grandad recently passed away suddenly which has really got to me, then on Monday my cousin was killed in a car accident! Will it never end! And now my neuro is questioning his dx of ms, as now 3 yrs on every relapse/attack I’ve had has been on my spine and my brain still remains all clear - good news he tells me, but what I think has tipped me over the edge this evening is… My neuro wants me to travel up to Liverpool (from Devon) to see a spinal specialist at the Walton Centre, got my app confirmation through the post today, thought I’d take a look at train prices as feel it’ll be too long a drive for me (at least a 9hr round trip), but now find that the train is going to cost the best part of £200 (£400 to take my mum with me) and there will be 4/5 changes each involving me needing to walk some distance which I just can’t do not to mention where can I find £400 from! I am going to need to ask for time off work for it too! I was originally thinking off staying over night to break the journey up but there’s no way I can afford that now too! Trying to plan all this, plus keeping my 5 yr old in mind and needing to plan help and child care with her whilst I’m away! Everything just seems set against me at the mo - feeling really shit! Sorry to rant - sat here trying to watch children in need and can’t stop sniffling! Liana!
Sorry you are feeling so low. It is good to let it all out and this is a good place to do it. You sound like you have been having a rough time of it. Sending you a hug
Hi Jen Thank you for your post and for speaking to your cousin for me, it means a lot to know I can get support from u/others on here - especially on days like today! Liana xx
I’m sorry about your grandad and cousin. You are having a tough time. Jen says her cousin gets no help but I still think it would be worth you asking about travel costs. That is a lot of money and I can imagine a lot of people will just not be able to come up with that kind of money. Cheryl:-)
Hi Cheryl Your right that is a lot of money to try and find - you could go on holiday with that sort of money! I have emailed my nurse about it, but am just waiting to hear back, hopefully she might have some ideas! Thank you though. Liana xx
What a dilema - Travelling is so difficult for us anyway with bladder/bowel issues. l should ask your Neuro what the tests the Walton Centre can do that you can’t have in Devon. And certainly ask if there is any help with travelling costs. Also, is there any help with fares as you are ‘disabled’ - and your mum would travel as carer. And is there any voluntary drivers who could take you. This can’t be the only time it has happened. Even ask the Red Cross - or St Johns. They might consider doing this. l have a friend who is in the Red Cross - and she does sometimes ‘transport’ patients in the Red Cross Ambulance. l shall see her on Monday - see what she has to say. Not that she is in your area - but she will know the procedure.
Have you asked the Walton Centre themselves - as you can’t be the only one it has happened to. They must rely on patients being referred from across country.
Hello Liana. Sorry to hear about the sad loss of you granddad and the terrible car accident resulting in the loss of your cousin. You really are having a horrible time at the moment. My husband has heath problems and travels long distance for hospital appointments. His transport is arranged via local ambulance service at no cost to him…its called patient transport. Also ring the walton centre. My husband’s hospital has an hotel for patient and carers. There is a charge but minimal…it may even be free for some depending on finances. Take care and all the best to you, Noreen
Oh love! No wonder you`re feeling so bad. Too much bad stuff going on would certainly make anyone feel like that.
I am terribly sorry to hear you
ve lost your dear grandad.............he will leave a huge hole in your life. That kind of pain is horrendous, then youve also lost your cousin in tragic way. my oh my!
Now about the Walton thingy…did you know your neuro was going to send you there? If you did, then you could`ve found out about the travel costs/difficulties before the appointment was made. Is there no specialist closer…maybe Exeter or Truro…Bristol? What good might this fella do for you? Have you asked that question?
Such a long and tedious journey would phase the best of us, eh?
Eee, I dunno…yes, it is brain bursting stuff hun!
Thank you everyone for your kind comments - I’m feeling a bit better today! I have contact my nurse and left a message for her ref travel costs etc, so hopefully I’ll hear back from her tomorrow with some ideas. I knew they wanted to send me to Liverpool previously but didn’t expect the travel costs to be so steep! My neuro is sending me there as he is questioning his dx of ms as I still have had no lesions in my brain. The country has two spinal specialists, one in Liverpool and one in Oxford, he asked if I’d go to Liverpool as that’s where he trained and he knows the specialist there very well. He told me he wanted him to go over all my notes covering everything to either rule in or out ms or other possible conditions! I am going to call the Walton centre tomorrow to see if I they can give me an idea of what my appointment will involve, how long it will take and then ask about travel possibilities! Fingers crossed I might have a clearer idea tomoz! Liana x
I’m so sorry to hear about the loss of your grandad and your cousin. You’ve certainly had a tough time of it lately especially on top of a bad relapse.
Regarding the travel costs I just wondered if you are claiming tax credits or any other benefits? If you are then you can claim back all the travelling costs associated with hospital appointments. It obviously only covers your own costs and doesn’t include accommodation for the night but it does help a lot. Try having a look at the hospital’s website and searching for help with travel costs.
So sorry to hear about your recent losses. No wonder you’re feeling overwhelmed. If such a distance is really necessary there must be some financial support available. Some helpful posts on here about that. Wishing you all the best, hope you get it sorted. xx