Asthma has been acting up today. Seems to be the cumulation of various triggers that seemed ok at the time but by evening lungs are defo complaining.
Just feeling so down about everything. Some days life seems doable and then some days i still end up thinking how the hell did i end up like this?...
For several months now various cons have been playing games with my meds for want of a better description. Especially steroids. Lung dermo internaledicine and renal all jave different agendas so it goes up and down several times a month. The stupidest thing. They are discussing possibly having another multi disciplinary about me. So now i again get to insist that i would like the hospital chaplain to attend. Theoretically this is allowed but i dont think many people take up on the offer. I just feel he knows ke best and knows all of me and wants the est for all of me etc.
When i was studying for A pevel equivalents I said to ky teacher i was only doing it cuz there was a small chance i would survive ky spinal op. Still doing it 4 years later. Thats pretty much why o got kicked out of uni though of course they never admit it. The government qont pay for ke to study when docs dont reckon ill live to complete a degree.
I can't say much that would be of use, but massive hugs and don't feel like you can't rant! There are times when it just helps and I think anyone would feel down!
I would definitely stick to your guns about the chaplain as I think it's important like you say to have someone there who thinks of you as a person rather than a collection of illnesses! Even though the doctors probably mean well I imagine it's hard for them not to forget about this side of things while they're discussing the medical side of things, so it would be good to have an 'advocate' there.
Hugs again anyway and I hope something gives you a break soon. You are surprising them all, they might reconsider when you finish your degree though it's rubbish you aren't getting any help.
More massive virtual hugs from me.
Definitely agree about being persistent about the chaplain - for all the reasons both you and Philomena state. You have a right to be viewed as a whole person and you definitely need someone there who views that as their agenda and can help steer the people present through the various trade-offs that likely need to be made between the divergent goals of so many specialists.
And phooey on the government for thinking you won't live long enough - that's not their job to decide. If you had the energy (perhaps you don't) I'd look into fighting it as a violation of disability rights or raising a stink by writing an op-ed and trying to get it published in a newspaper that lots of people read. No one (human) can know how long a person will live or die and it the government's job to hand out deadlines like that. It's just wrong.
Thanks Philomena and Beth
yes that is defo the big downside of getting helped by the disabled student services is that then uni doc knows when pther docs say i jave only 18 months left o whatever. Though im the queen of proving them wrong for stuff lile that. Several times theyve asked my mum to switch off ventilators etc but im still here. But then i get to th point where i dont know if its worth it because although i am alive my life seems to be ruled by illness meds and costa.
Sorry but thanks for the rant licence. Really needed atm!
sending a huge virtual hug and a reminder that on an emotional level, good days and bad days are normal, you are working under difficult circumstances so maybe you get more than your fair share of days when you feel really down - but dont forget that life seems to know when we REALLY need a break and gives us those random good days. I hope you have a really good day soon!!!
Lots and lots of hugs so you can spread them out and use them whenever you need them.
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Stuck in same place (slight rant alert!)
