Forum

Collecting Illnesses

Hi I apologise in advance for the incoming stream of consciousness. Ten years ago I was diagnosed with a rare neurological condition called Idiopathic Intracranial Hypertension (IIH). Since then I’ve seen every specIalist in Greater London with ‘neuro’ in their job title, been on loads of different medication, had countless lumbar punctures and in October’12, had brain surgery to place a shunt (like a tap) in my head. After the surgery, the neuro-ophthalmologists didn’t see the results they were hoping for. My optic neuritis didn’t improve, I had numb legs and one morning woke up to the joys of L’hermittes. Two CT scans, one MRI - which messed with my shunt - and yet another LP later, and the MS diagnosis came in July’13. The MRI showed lesions on my spine and my cerebral fluid had markers associated with MS. Good times. Apparently it’s really rare for a person to have two neurological conditions at the same time and as the IIH came first, they attributed everything else to it. It wasn’t until after the surgery that they started to look elsewhere for answers. My mum has MS, too. She was diagnosed at exactly the same age as me. It started as RRMS but now it’s SPMS. I have RRMS and am trying not to compare us as I know it’s different for each patient, but it’s not easy when it’s staring right at me. I’m going through a bit of a rough time at the moment. The day I met my nurse for the first time was also the day everyone at the company where I worked was made redundant. I came home to Sussex to start again, but can’t find work down here. I do mention the MS when asked and strongly believe that it’s that that’s stopping potential employers. After all, who would pick me over a healthy person? But I refuse to lie because it’ll only come back to bite me in the you-know-what. So I commute from Brighton to London every day because the only work I can get is temping for a charity, I walk around five miles a day to try and keep the costs down and am out of my house for over twelve hours a day. I’m shattered! So that’s me. The 36 year old temp accountant with two dodgy brain issues, A psychotic cat and a fear of getting too close to anyone because I can’t ask them to sign on for carer duty (whenever that comes). Thanks for letting me vent. I’m going to give myself a mental kick in a minute and plaster a smile back on my face. I’m sure a glass of wine will help!

hi phoebes

you really have a lot on your plate.

its difficult to let go of your plans and dreams, but maybe look at it as a temporary adjustment.

nobody has a guaruntee that they will never need a carer.

its just that chronic illnesses make us aware of the possibility.

enjoy the wine!

love the sound of your psychotic cat!

carole x

Talk about a lot on your plate! No wonder you’re feeling a bit fed up, but there’s nothing wrong with that. You’re only human and now and then you’re going to have days like this. I hope you find work closer to home soon, that’d be so much easier for you. I’m glad you have a psycho cat :slight_smile: better than a boring one :slight_smile: I have two nutters of my own and they make me laugh so much with the things they do…a good tonic. A thing that cheers me up is watching the funny animals on YouTube , they cannot fail to make you laugh, especially the cat ones :slight_smile: treat yourself to something nice, chocolate works for me. Big hugs to you Hun. Xxxx

And you didn’t sign up for a game of ailments bingo! That is really tough, and I know only too well the mixed blessing it is to be an ‘interesting case’ for the docs (only briefly in my case, because I turned out not to be interesting after all…)

That sounds like an awful commute - no wonder you are tired at the end of the day. And it doesn’t leave you with much time to look for something more suitable and convenient either.

All I can suggest is that try not to look too far into the future, particularly if you are temperamentally inclined ot think the worst. You have enough on your plate without tormenting yourself with things that might never happen and consciously narrowing your life and your options far more than you have cause to do. Of course a person needs to be realistic, and that is a strength. There is a fine - but definite - line between sensible realism and meekly surrendering territory to MS before you have to. Try not to let theoretical risks about the future cast too long a shadow - particularly when it comes to relationships. Other people are perfectly able to think for themselves and decide how they feel about you and a possible future together - what makes you think that is your job?

Good luck with it all.

Alison

Sorry to put another website info on here but have you heard about Access to Work?

Now I know that they can arrange taxis to and from but Brighton to London I don’t know. You only pay the equivalent public transport fare; if they could would save a lot in fatigue; see https://www.gov.uk/access-to-work

There are lots of ways they could help; well worth a chat.

G

Hi Phoebes Human, (I was going to call you Phoebe, but I’ve a feeling Phoebe might be…a cat?)

One thing I haven’t seen anyone else mention yet is you haven’t got to lie OR tell the truth about MS on job apps. It’s OK not to mention it at all - that’s not lying, and can’t “bite you on the bum” later, as, for the most jobs, there’s absolutely no obligation to disclose medical history, and they’re not supposed to ask. (The same now with age, whether you have/intend to have children, etc.) Hence it’s not a disciplinary matter not to pipe up during the application process, and they can’t hold it against you later.

There are a limited number of exceptions - for example, some safety critical jobs are always going to have fitness criteria. Someone here was recently turned down for a job driving ambulances, for that reason.

However, IF the job is one that requires full disclosure, they will make that quite clear. If nothing at all is said, then you’re not under obligation to raise it.

Occasionally, there will be a separate, optional, health questionnaire, either for “equalities monitoring” or to help the employer plan what disabled facilities might be needed. But it should make clear this will only go to HR and/or Occupational Health, and will not be passed to the person doing the hiring.

Tina

x

Thanks for the advice, everyone. I’m going to look at the websites etc mentioned and have decided to become more proactive in general, rather than sitting about feeling sorry for myself! And yes, Phoebe is my psycho kitty!