Pension payments and rant

[Leaf100]

I want to say I am feeling some relief but also want to vent.I have to submit some paperwork annually to keep my disability pension - fair enough, even though the specialist has made clear to them over the last 15 years the situation is permanent.

This year my specialist had a health issue and when asked to submit I told them, let them know when he was back in the office working through his stack of paperwork, and sent them in when I could. Which was over a month ago.

But - they suspended my payments without notice. They did not restart them, even though they told me the paperwork was accepted over a month ago. I don't think this is just. I went to the local bi society here and asked them to help - I know they have more clout than I do.

I just heard from the bi society today that I will be getting the suspended benefits next week.

I find it unsupportable that they can suspend you with no notice, and then accept paperwork as complete and not reinstate you - til you get someone else to intervene on your behalf.

I also found out that the person I always thought was my case manager there, isn't. Is it not ridiculous to deal with a place that keeps your actual case manager hidden from you? A d that for 15 years I have not known who my case manager is? Tbey didn't tell me now, either - they did tell my case manager at the society.

Dealing with this is always a lot of stress, you never know how they are going to take something, if some innocent comment by a doc is going to send them on a witch hunt, if some snarky comment by some twit with Dr in front of their name who doesn't understand bi is going to send them on a witch hunt.

The witches are all innocent. The ones who burn them, drown them, or crush them, or harrass them are all psychopaths - yet the people are afraid of the witches, don't understand them, and think they are the bad ones.

I am fed up with being treated as less than, and someone to take advantage of, just because I have a disability.

Rant over.

Thanks for listening.

Leaf

[Hidden]

Good rant, and relax.

[Leaf100 in reply to Hidden]

Thanks Pink.As long as the money keeps coming, the rest really is small potatoes.

[Justafall]

Thank goodness you’ve managed to navigate your way through the madness. What a waste of energy though - and I expect the worry and frustration did your bi no end of good.

As a relative newbie to the bi community I’m only just learning, through first hand experience, of the lack of nhs services and support. I understand that services need to focus on life threatening illness but I don’t want to feel guilty about expecting that there’d be support after my life changing fall. How naive.

Witches unite seems like an excellent idea!

Well done you though for having the fortitude to take on the battle.

[Leaf100 in reply to Justafall]

Hi Justafall - I replied and it came up in the other section... thanks for your support.. Leaf

[Leaf100]

Thanks for your support, Justafall. This true, dealing with this makes you a strong person in many ways. Especially if you don't have much family support. (Not having is not uncommon - many just flee.)

Here is a bit of a survival guide -

Do keep a log - more than one, actually. Even if it is just a calendar with things written - if you can't , then use the thong that tyoes what you say. You need a list of appointments, who you saw, type of pro, address, phone, notes if what they said, copy of their report can go in a different file. You need a list of all the stuff you do for yourself - separate from this - any exercises you do and how they go, any task you do that is tough for you that you do anyway and how it does you in - phrase it all as self directed therapy. A lot of how you feel and circumstances- ex if weather changes x happens, had massive headache and had to stay in bed - whatever it is. Be sure to include medications, keep track of those that don't work and why, not just what you do take.

When you have appointments never go alone. You'll get treated better by the Twitty Ones. Plus, the other person will remember more if what good ones say. You are allowed to have someone with you - so if they try to kick up about it, insist your person stays.

Do not rest up before appointments, spiff up too much - but don't go dirty. Though if you have trouble washing hair etc leave it dirty. If you are female don't wear makeup or nail polish. They will judge you as being better than you are, otherwise. Tell them your worst day, not your best. If you go with food on your clothes or something, they will assume things about you you don't want them to assume.

Get used to the idea they will likely assume you have psychiatric issues rather than a bi. Actually, if they do and you get money coming in anyway, it doesnt matter. Most if them will likely think mist, if not all, of your symptoms are psychosomatic. It's them, not you.

Don't be fast to tell people tou have a bi. Most people will look at you and treat you like you are going to follow them home and eat their children. Instead, say your symptoms or use language they can relate to - ex I had my bell rung too hard and I'm struggling a bit with filling out this form, can you help me? Or, I have a tremor and if I try to write this no one will be able to read it.

Yes, I am afraid you do have to manage others, not just yourself.

Do find yourself a group or society that can help when needed. Them sending a fax or email on your behalf can cut through a lot of crap or situations where you yourself are ignored. They also know which docs and services tend to be helpful and who the super twits are. The staff sometimes cant say who to avoid but the other clients can.

The various logs are there to help you fill out forms etc when you have to jump through hoops. And get help from the society with forms. Almost no e of them are set up for bi people and the diciety will know how to fit it in. In some cases this is a line through everything and stuff in a comments section ir attachment. Sometimes it seems like : question: do you put strawberries in your tea? Answer: I don't have a dog. In short, you'll gave a much easier time not trying to sort it on your own.

Oh. When submitting paperwork never assume they have what you sent before. Send it all again. Have your name and ID at the top of every page - sometimes pages get separated for assessment and if you don't do that the pages get lost or they get you mixed up with someone else.

Ask for copies if notes/ reports / tests / lab work everytime you have something and kero them safe. When you need, take a photocopy and send that in, keep one whete ir should live. I started scanning everything that scans.

Discuss all meds with a pharmacist- bi literate if possible. Ask about side effects or look them up . For example ones that make you mouth and eyes dry do destroy your teeth and harm your vision - take precautions. Xylitol will stop cavities and a mouth moisture thong will help . Use eue drops. Log them to help remind you to do use it.

Write down when you take stuff- a list you can put ticks beside is easiest, though do what works for you. It's si easy to forget, or to not remember if it was yesterday you did it or not .

Be kind to yourself, and be kind with how you talk to yourself It is so easy to think oh I used to thus ir that, why can't I, why am I so slow, beat yourself up in various ways...speak to yourself in a way you never would to someone else with issues. Instead, say things like well things are different now, I wonder how this will go. Oh you're having a bad day - have a rest and try again later, it's OK. Goodness that took a lot of effort! I got to x point, good for me! Of course I feel different than I did before, I have an injury. Etc.

It can take awhile to be aware of how things gave changed. We assume we can do x til we try and find we can not anymore. Awareness comes slowly for a lot if us - measured in years slow. Sometimes we think we can do x when we try but it really didn't go that well.

Don't expect other people to get it. It is pretty odd sometimes. Practice 'no' in front of a mirror. The words no and I'll think that over and get back to you - very important. People will try to push - at worse to take advantage and at best cause they dont get it . I'm not really processing that and need more time is good for friendlies.(Yes, there are friendlies out there - I have found the gays and the indigenous people tend to be more understanding - maybe because they know what it is like to be judged harshly.)

If a doc or someone is a twit don't say that to other medical people. Just say 'so and so wasn't helpful'. They hate it when clients complain because they think you complain about everyone or are difficult and they will be less likely to help you.

Take everything one moment at a time. One step at a time - on days you can step. On days you need to rest it is still a step forward. Life us different and there are still things to appreciate, to be content about, and to even find happiness in some simple moments.

Yes, keep or simple.

There is likely more but this is likely the main stuff..

Oh, rats mice, I think I typed this in the wrong spot. Oh well.

Leaf