Medical Battering - How do you cope?

Hiya

Well after my move from Yorkshire a few months ago, I have gone from one extreme to another. In South Yorkshire I was left alone for virtually for 10 years with a feeling from the medical profession there of ‘grow up and get on with it lad’. Now I’m on the Wirral and it’s a whirl wind of non stop appointments. In fact yesterday I’m turning around to some nurses saying I can’t fit you in until the following week.

It’s seems every appointment I go to they find something a bit broken with me and refer me on to another section and then the merry-go-round starts again.

Yesterday, I was feeling a bit down and tired after yet another ‘broken bit’ was found and yet another appointment and yet another referal to another section for something else.

I used to find going out to these places great - when it was once in a blue moon but now I am bombarded with it all. So without boring you with the appointment details - How do you handle it all mentally?

Marty - The Broken One

Hi Marty I have been struggling, mainly to a decision on dmds and eligibility, now I am not “bad enough” I have been referred to a shrink by my MS nurse. Watch this space Take ie easy Mike

The title of this thread reminded me it’s been too long since I had a battered sausage from the chip shop…dipped in a pot of curry sauce…yum!

As a general rule, if you tell a doctor or nurse about a problem, they believe you want help with that problem, it’s why they are there after all. If you didn’t want help with something, you wouldn’t mention it, would you? I’m sure this forum would be full of unhappy people if you told a doctor or nurse about a problem and they just ignored you.

For the first 8 months after my initial doctors appointment to say “I’m a mess, whats wrong?” I saw the inside of a hospital more than in the previous 33 years of my life. Neurologists, Physiotherapists, MRI, Lumber Puncture, MS Nurse etc.

It’s died completely now, I see nobody, either by design or because my file fell down the back of the computer. If I need help, I’ll make a nuissance of myself until I get it, otherwise I’m quite happy shuffling on alone.

I’m sure if you told whoever was taking action on your behalf, you don’t want action taken, they would accept your decision. It’s intended to help you, if you feel it isn’t helping, just tell them.

Hopefully things will calm down soon.

Welcome back to the Wirral Marty. Who are all these people? I live on the Wirral and the only contact I have with medical professionals is my GP,and he’s just a drug dealer. If you don’t like what is happening stop going to the appointments.

If any of them are for the ‘Evil Empire of Walton’, don’t panic the novelty of a newby for them to play with won’t last and you’ll soon be on 20 minutes a year.

Wb

ps If you want to have a bitch about this over coffee in the rain, whilst you watch me smoke, PM me

Hi Marty,

Do you feel you are getting benefit from any/all of these appointments? Do things actually end up getting fixed, or are they just making your life worse?

If you feel your life was actually better when you were left to “grow up and get on with it” (and after all, you presumably didn’t come to harm in all that time), you are perfectly entitled to say as much. You don’t have to accept any and all medical appointments you are offered - particularly if you’re not finding they make a huge difference, and if the stress of being excessively “medicalised” is outweighing what benefits you do get.

Personally, I’ll see a medic when I absolutely have to, but I don’t want to be bombarded with appointments all the time “just to check how you’re getting on”, and things like that.

How serious are these “broken” things they keep finding? If not seriousl, it’s perfectly fine to say: “It’s OK, I’ll just live with it, thanks.”

I know some will say you should always get everything fixed that can be. But if the continual attempts to fix are starting to have a bigger impact on quality of life than the original problem, it’s a very fine line…

Tina

i agree with frostpaw. if you explain that at the moment you have too many appointments and would appreciate it if they would defer any further actions, they will appreciate it.

i asked my ms nurse to refer me back to the continence clinic because my bladder has started misbehaving again. i had appointments for this clinic when i was diagnosed.

there’s not a day goes by that i don’t appreciate the small adaptations that the occupational therapist arranged, the help that the physio gave me in maintaining good posture and walking downstairs, and the help with drop foot that i got from the podiatrist. i don’t need these professionals at the moment but it’s reassuring to know that i can be referred back to them if and when i need it.

so marty, i cope with all the medical appointments by just asking for the service i need at the time.

i’m an expert on which hospitals/medical centres have the best cafe!!!

carole x

Hi Marty It sounds. Like you have been ‘seriously loved’ by the system what Tina, Carole, and Wb said us right, if you don’t smoke you old inhale. By the way Chris and fluffy are from you neck of the woods Mike

Sorry meant chis

I’m also in Wirral and no one gives a @&£: unless I tell them! I go to Walton 4 times a year and that’s my lot. Have you been to the Hope centre? They are very nice although having said that I ran a mile from it as the wheelchairs scared the living daylights out of me! I don’t smoke, but I do eat cake! Chis

Hi, well I am in Yorkshire and I have had a lot of medical appts. granted they havent always been helpful ones.................particularly all the neuros Ive seen…but other depts have been pretty quick to see me and had a positive outcome.

I can highly recommend our Social Services/.equipment bods/.OTs/wheelchair services/GP & ancilliary staff.

So I feel I have been treated well overall…just need that dratted elusive dx now!

luv Pollx

Hello Marty,

I know what you mean. I had assumed that I had reached some sort of an important date for having had MS for a certain time, but if you find the same thing at your end, then perhaps this is a new national policy. I find it hard to keep up with all the appointments (and taxi fares!) at the moment, but this was even worse last year when it really was a struggle. Isn’t this all due to the state wanting to find out which disabled people are the genuine ones, so that we can be genuinely looked after, while the ones swinging the lodestone are brought to book?

Good luck,

Moira

Hi Marty

I know what you mean. Like Carole says, I also know which ones have the best cafes &/hospital restaurants. Failing that, the nearest one around.

The one consolation I do think, and I don’t know if this applies to you, is that there is no way on earth with all these appointments that I’d find time to work!

When I have to go for my ESA interview, as I’m still on DLA & IB, then I’d only need someone to carry 3 lever arch files of all the appointment letters that I’ve received in the last 8 years or so.

I’d love to take a piccie of their face when they see these files!

:slight_smile: