Long overdue update.

Hi everyone,

Firstly i apologise i haven't been a good blogger lately. Its been a rough few months both physically healthwise and emotionally with a few ill informed individuals who were trying to make my life difficult and upsetting. Hopefully this has now passed but after a lovely conversation with my good net buddy odette over the internet (thanks hon) i realised that it doesnt matter what these people think really. At the end of the day i started this blog not really bothered if anyone read it or not as it was more for me to have a place to air my frustrations and write about my experiences - both good and bad. I have been blessed with readers who check regularly to see if i have updated and i am very sorry that recently i have been bad at this. I guess i just needed a bit of time out away from hurtful comments. Im back and shall return normal service :-)

So. Whats new? Well, where do i start? I have been unable to drive again as i had another seizure. I have not had one in well over two years till this recent one and i have never had one whilst i have been well ever before they have always been whilst i have been poorly in hospital prior to this one. I was stopping at a good buddies house when it happened totally out of the blue whilst i was eating dinner and mid sentence talking to her. It has left me feeling rather frightened and confused. I dont know what has caused it dont know if it has something to do with whats been happening with my wierd pupils (been suffering with intermittent anisocoria for 12 months) or my brain cyst or both or neither and related to some of the medications i was taking. I am terrified of it happening whilst i am alone at home and just want some answers. Its taking a very very long time to get an appointment with neurology consultant tho!

More recently i have completed pulmonary rehab sessions and passed with flying colours :-) i was very very pleased with my post rehab walking test results which showed much much improvement on my pre rehab walking test. My physio will continue thro the active program offered by city councils in most citys and areas around the uk. Im looking forwards to the change but also slightly apprehensive as to the change.

In other news i had been relatively stable chest wise partly i think due to the physio. They've also been doing talks and things after each session on anything from managing medications to sputum production and chest clearance to pacing and relaxation. Its been fab.

Recently tho as in the last fortnight really i have been feeling rather run down. Sleeping loads and i mean loads. I have been struggling to stay awake longer than an hour a day some days. :( I started on an increased dose of pred again around 14 days ago in the hope it would make things better and initially it worked really really well and i did pick up, then recent stresses have made me even more run down and i also had a couple of tummy bugs which further knocked my system! The hypoadrenalism has not been too great through the bugs so i've been using a lot of I.M hydrocortisone injections most days requiring one or on the days i couldn't face an injection trying to keep 100mg of oral hydrocortisone down me! It has helped keep me away from adrenal crisis though which is always good! :-)

Last wednesday however, i started with a chesty cough and way more productive than i am normally (i dont usually have much sputum-sorry gross i know) i called the doctor and they gave me more pred and a pot for a sample to send one off-im still awaiting these results to see what bug it actually is growing in there so they can give me appropriate antibiotics! I was started on augmentin on wednesday this week as my temp has been really high and i have been feeling really unwell for over a week with progressively lower peak flow recordings the gp called yesterday to see how i was getting on and still wasn't overly pleased with things so i had an appointment with her today. She listened to my chest and the wheezing is very localised to an area on one side of my chest she said which figures it has been quite tender there when i have taken a full breath etc. I have had to increase my nebulisers to every 2 hours during the day/evening as required up'd the pred further and been instructed to take regular paracetamol as even with this my temp has still been slightly raised. Im really frustrated. I am fed up of feeling poorly and just wanna have a few well days again. I know i will be fine again soon im just feeling sorry for myself i guess! :( i miss my family too and i cant visit at the moment as i have no transport and stuff - im feeling really lost without my car :( anyways i have developed a rash in the last 24 hours which may or may not be a reaction to the antibiotics or it could just be due to the chest infection itself according to the doc and the pharmacist!

I have my orders for the weekend. I am not to let my peak flow drop as low as i have been letting it. Its not to go lower than 200 at all! I am to monitor the rash which i have and was told not to take the antibiotics anymore if it got worse which it has during the day today so i have missed this evenings dose and now will have to call the oncall doc tomorrow. I was told not to let my temp get higher than 38 with paracetamol and stuff. . . .

I am not sure what the oncall doc at my practice can do but may need to change antibiotics if it is a reaction to them i really dont know what it is tho its wierd its not itchy doesnt hurt and isn't raised but its almost got an eczema kind of appearance but it isn't eczema! Ah well.

Anyways i have bored you all enough with all of that rubbish. That is whats been happening physically anyways so its been fairly busy on that front.

On a social front i have not done much. I haven't been too mobile recently since my physio and bone doctors decided i needed to use crutches for now- i have no idea how long this will be for. I was told to use a stick 2 years or so ago and that went on longer than i wanted it to so i just hope this isn't a further progression as i really dont want to have to use crutches on a semi permenant basis!! But such as life i suppose. Sooooo due to not been able to physically walk too far and being unable to drive i have not been out much most of my socialising has been seeing my neighbour for a coffee when i have been up to it. I have had a few friends stay over tho which is always nice. Joey a friend from the blogging community came for the weekend whilst i was unwell to look after me bless her, and a couple of mates came to visit yesterday one staying over night which was lovely. I have been missing not going back to see my family as much as i did when i could drive! I am currently just waiting for my little brother to be ready for me to do my artistic stuff with my nephews bedroom and playroom which his mum has been giving me ideas of how she wants it to look etc. I have been drawing pictures and painting etc then picture messaging her to show her my progress :-) she so far has loved all my designs and i am looking forwards to getting down there when they're ready for me to start painting the walls and complete it. I cant wait to see it all finished! :-)

So i have loads of stuff coming up to look forwards to i just need to kick my stroppy lungs into touch again! Hopefully it wont take too long for that to happen and hopefully my brother and sister in law will have got the little ones room into a state ready for me to start my drawings soon!

Sorry for the rather long post but at least i have now brought things up to date again and you all kind of know where i am at. Oh also before i go thank you louise, joey and odette (and a couple of folks who will know who they are) for your support recently it would have been difficult to get back to it without you guys!

Hope everyone of you is well and enjoying the beautiful sunshine we are having at the moment. :-)

I will scribble again soon.
Lotsa lv rattles Xxxx