I’m feeling really distant today I’ve volunteered this morning at Glenfield hospital here in Leicester, like I do every Thursday working with patients who have respiratory diseases like me.
But have felt like I’m on autopilot and not thinking about things, I feel like I have no one who is there for me I feel as though I shouldn’t be here like I’m a trouble to people and everytime I text someone they are sitting there rolling their eyes and thinking O God not him again!!
I don’t like feeling like this I wish someone would chat with me and help me to feel less alone, I just want my smile back when that young lady is around I get my smile back she makes me feel nice she gives me hope and a feeling that someone does care.
I hope she reads this and don’t feel pissed off with me! I find it so difficult to talk to her face to face probably because I have been got at so much by others when I’ve tried to talk to them.
This young lady puts me at ease but I’m afraid of her reaction if I spoke to her face to face where as via here I don’t get to see that reaction which mean I’m feel less anxious about it.
But am still anxious about the probability of a not so pleasant text message.
If only I did feel such a spare part or not really welcome even though she has invited me out, then I would probably go out more.
I would feel better if it was just her and me for a few time that way I can get over my anxieties and she would be able to help me deal with my problems of not being very sociable around others.
The sociability problems come from my childhood and me not being allowed to be a part of any family activities, that meant parties and family get togethers I was never ever allowed to join in with as my treatment would always be the priority.
Hence why these days I feel so isolated so much.
Today i’ve been to see my respiratory consultant for my six monthly check-up my check up consists of a breathing test called Spirometry which is used to check my lung compasity to see if it has changed from the last time i was in clinic, this helps to identify if the disease has developed further or has stablised, in my case the results show that my lung capasity has increased from 42% to 47%.
But the FEV1/FVC (FEV1 = Forced expiratory volume in one second) & (FVC = forced vital capacity) if you have obstructive airway disease like i do then the amount of air you can quickly blow out of your lungs is dramatically reduced this results in a lower FEV1 than FVC.
I also have blood tests which check for underlying infections. my PEAK FLOW READING LAST YEAR was averaging at 148 it is now 200 which is great but it was felt from other results that my disease has developed a little more than last year, but not as much as it did the year before this.
The biggest noticable change is my weight last year i weighted in at 78.4kg (12.34 Stone) now i’ve 66.2kg (10.42 Stone) and it is possible that this could be a mix of lots of different things, i’ve also lost the ability to walk long distances and when i do i’m much more tired than i used to be.
All in all this isn’t the greatest results i wanted to hear but it isn’t something i wasn’t expecting, it was decided that i should try a different daily maintainace antibiotic which i have been each day for some years, the problems with this are that your body gets used to antibiotics and this means that they are not as effective as they could be to help prevent infection.
So as of tomorrow i start Azithromycin instead of Doxycycline for four weeks to see if there is any noticable change however this new antibiotic has to be taken three times a week instead of every day, this is going to be fun!! It was also decided that i would changed my Pulmicort 400 and Oxis 6 inhalers to a new combined inhaler called Fostair 200/6 which i have to have two puffs twice a day. this should also be interesting and a challenge to remember.
My consultant agreed that my depression was mainly caused by my medical conditions and as i was always aware would come and go over my lifetime, it is something that the norm for most patients like me and with the help of anti depressants and understanding people it will not completely disappear but will cause me ongoing problems.
I really hope the young lady i know reads this blog and learns to understand why having her around to chat to and text really helps, i know i’m a pain in the arse and someone that upsets her a lot but i don’t mean to and i really don’t want to lose her she is the best thing in my life at this present time.
She hasn’t cheated on me and i sometimes wish she was always there for me but i know she isn’t and i wish she really was, i trust her beyond anything and anyone. I feel i owe her so so much she gives me hope when i feel so so down and lost and alone but i know she don’t see this and i know she thinks i’m always upto something.
I just wish she would acknoledge me that she is aware i like her and that although she isn’t looking for someone she will as least give me the benefit of her doubt and allow me to treat her really really nicely and like a princess until she feels she does won’t someone.
I’ve worked out that she is really stubborn although she is extremely sweet, and caring.
Its been a boring day! i woke up at 1 am to the sound of what was dad falling at the bottom of the stairs it seems he was attempting to make his way to the loo and just misplaced his stick which in turn meant he lost his balance and fell down.
I called paramedics because i wasn’t willing to take any chances at trying to get him up just in case he may have broken something, although for the 20 minutes he was down on the floor in the hall he was happy to keep telling me he was sorry to wake me and for causing me a problem, But when the paramedic arrived and suggested that for precaution it would be a good idea to take him to ED he point blank refused stating that mistreatment by that hospital had resulted in the death of his wife (my mum) but this wasn’t the case it was a isolated incident on two wards where care procedures weren’t carried out correctly.
At the time myself and my brother made a formal complaint and decided that the finding of the investigation where acceptable, but dad is still trying to blame someone for something which was going to happen anyway regardless of how she was cared for.
It was suggested that they would get our GP to call as soon as possible.
The GP called at 12pm to talk about dad’s legs and pain management and still decided that there was nothing extra that could be given for his pain.
After he had called dad gave me some money and a list of food to get from the shops, “and bring back the change please! i brought back all the shopping and his change he didn’t want me to get anything for me he said that i have enough as it is.
To be honest i have one glass of milk every morning and thats it i really have no appatite anymore i have a bag of crisps and bits and peices throughout the day but nothing else really.
Tonight i went out at 5.40 like always wasn’t happy leaving dad but he told me to fuck off and keep the cow happy, i worked out that the cow meant Jenny he rambled on about something else but i wasn’t listening so i got my coat on and walked out.
But tonight i really didn’t care if Jenny was meeting me or not, it feels like we are friends we don’t have that spark anymore she sent me a message earlier saying i’m never interested in what she is doing and when i’m how i am i make her feel down to. I’ve tried to explain about my depression but she don’t get it and thinks if i take some lemsips and drink plenty it will all go away soon.
There was nothing to eat in the house again so raided my money box and and bought some chips for me and some for jenny, its the first hot thing i’ve eaton in a few days so it was nice but i didn’t really care if i had them or not i’m bored of everything i don’t care if i never eat again my weight has gone from 72kg to about 66.2kg over the last 4 months.
I don’t really care anymore sometimes i have my medication in the morning and sometimes i don’t! my memory is playing tricks and its getting embarrassing that people around me at remembering stuff that i should be doing, When i got home tonight dad was sitting on the sofa crying again, the pain from his joints is getting worse and he is struggling to cope but so am i.
I don’t know how to help him i don’t have any of the medication that i had when mum was here and in that amount of pain, i’ve given him what i have tonight 2 x 30/500mg Co-Codomal tablets its all i have as a last resort the GP is concerned his newly diagnosed Chronic Heart Failure is going to be affected by all the pain medication so he has stopped everything i had available. I hate seeing him in this amount of pain its like history repeating itself yet again.
I can see that i will be blamed by everyone for not taking care of my dad and will be made a scape goat by my brother if anything happens, The GP said that there is a potential risk of Serious Heart Attack or Stroke for my dad if the pain continues as it is but he is unable to prescribe anything to help.
I feel so alone the carer that i should have for 11 hours a week Monday to Friday only turns in for 3 out of the 4 and if she feels like it, I end up doing most of the things the carer should be doing and its starting to tirer me but if i say anything i get told by dad that if i make it so she leaves he don’t want to ever see me again, because she looked after my mum he owes her a promise to keep her job until he has gone.
I can’t win but I’m keeping calm about it.