Feels like my first post,it's been so long
Good morning journal,the time is 5:56am,I have been awake for over an hour and finally I decided to come here and try and write a little.I haven't made an entry in my journal in eleven days or so and it feels strange,a little like my very first time all over again.Well,what has happened since my last visit?,I have been quite ill with a serious lung infection,I've finished the course of amoxicillin antibiotics my doctor prescribed,but I only feel marginally better than I did before I took them.My breathing is still very labored and I still have the same cold I had before I started and my days are still days of extreme fatigue where every movement is a monumental effort for me.The last two days have been extremely tiring for me,on Monday I dragged myself into town for my scheduled visit to John my therapist only to be told that he wasn't there because he was ill,why didn't they call and cancel my appointment?,simple,they didn't know I had one.John had simply said on their system that a new appointment had been made,he neglected to say when it was scheduled for,so they had no way of knowing and simply didn't contact me.When I asked why they didn't call me and ask when I was due to see him,the girl shrugged and pointed to the computer screen and said that it wasn't their job to guess when appointments were for,if there wasn't a date entered they simply ignored it and waited for the client to turn up,well that's alright then,I thanked her quietly and left after getting her assurance that she would put a note on my file for John to call me when he came back to work although she couldn't be sure when that would be as he was on long term sick you understand,oh I understood,I understood that with all of the marvels of modern technology at their fingertips,my home phone number,my cellphone number,my home address and my e-mail address,nobody thought to take two minutes to contact me to cancel because my therapist wasn't available,thank you very much miss whoever the hell you are and I hope you too have a nice day.When I arrived back home,my wife was both angry and as mystified as myself at the clinics "non action" in contacting me,but I guess that when you are just one patient in a big system you can slip through the net,what burned me most of all was the bus ticket I'd shelled out for when I didn't need to,oh well,such is life.Tuesday,oh that was a day my friends,my disabled living allowance appeal was to be heard at 10:00am in a place called Prudential House,a grand sounding venue indeed,and with equally important sounding people sitting in judgement on it.We had a judge,a doctor,someone who works with disabled people and a woman from the actual DLA department asking me questions about things that happened last November,what??. When I asked why last November they said well that's when your claim was refused and although they could see that my condition had deteriorated drastically,they had to base their judgement on the answers I had given in my original application,well fine,so why the hell am I here?,they could have simply read the bloody papers and sent me their decision if my present condition wasn't going to be a factor.Now,most people who attend a tribunal get the decision on the day after adjourning to the waiting room while the panel decide on which way to vote before calling you back in to hear their verdict,not this boy though,oh no,I've got to wait for a letter which will be sent to me in the next three or four days.When my wife and I finally exited this modern day equivalent of the Spanish inquisition we looked at each other and said one word in harmony,"no",neither of us felt that the decision was going to be a favorable one,but,let's wait for the letter,you never know,and as I typed that last bit I could swear I just saw some flying pigs soar past our lounge window.Last evening,I retired to bed at 8:00pm utterly exhausted at the effects of the previous two days on my already weakened system,I grow tired at losing so much of my time to sleep,I miss huge parts of my day simply because,with the slightest exertion,I need to sleep,not just a nap like most people,but hours on end,it irritates me beyond belief.Oh,while I remember,one of the questions from the person who works with disabled people,remember her?,question:,"it says here that you have been suicidal,are they just thoughts or have you attempted actual suicide?",me:,"not yet",interviewer:,"I see",end of questions,well pardon me, if you have a small pen knife or a razor blade about your person could I borrow it for a few moments while I convince you that my suicidal tendencies are real?,who ARE these people??. The doctor?,yes he asked questions about my general health,your a doctor,examine me,that's not why he was there,well are you just going to guess?,the actual judge said very little except when she failed to disguise her obvious displeasure when my wife asked if she could say something at the end of my interview,having already asked her to be quiet earlier as I had to be the one giving the evidence,I can't remember what happened yesterday,how the hell do they think I can remember stuff from last November?,but she allowed her to say a few things even though I got the feeling we were delaying her morning cup of tea and we left,game over.If I sound a little bitter this morning that's because I feel a little bitter,they weren't there to consider overturning the department's decision,they were there to rubber stamp it,they refused to hear any new evidence although it was right there in front of them,in letters from my doctor and my therapist,and in my obvious physical frailty,they based their judgement on the questions I had answered eight months ago,I can't remember my answers from back then and I wasn't given the opportunity to add anything because they didn't actually tell me what my original answers had been,instead,I came out feeling angry and stupid,I had been sandbagged and I knew it.Anyway,today I will make the best of what is,what will be will be,and no amount of wishing on my part will make it otherwise,we are in God's hands and we trust in Him,until next time journal,may peace and easier breathing go with us.
Replies
Wow, WHAT A LOT OF UNFAIRNESS!
Often in illness, are helpless dealing with the \'system\' , it causes frustration and and anger.
If you could get suggestions from other people who have walked this path.....?
I wish there was some way to remove these obstacles...
Sending you hugs and good wishes
So sorry to hear you have to go through all this. It is not fair. I am trusting God will take your hand and take care of you. Have faith and try not to worry. I know sometimes you just want to scream Wish people were more understanding of how this disease affects us. They don\'t realize it\'s hard enough to get there in the first place and they don\'t seem to care. I hope your breathing gets better.
Try to stay calm (I know easier said than done). You will beat this....You are a strong person. Just try to relax and take it easy. Getting upset only worsens the breathing.
Hugs