Thursday 20 March 2014
Reflection...
Today I have been up to Bridgwater with my other half to see my old respiratory consultant to make sure that my transition to my new local has gone smoothly and that things are semi remaining ok.
I updated her with regards to my last admission and that it was again in ITU needing NIV. I also updated her with regards to my allergies, my myopathy, my manitol test and all else that I may have been told in the last 6 months.
As usual, she was very pleasant, caring and helpful. She said that now having done the mannitol challenge test, it obviously helps with the confirmation of asthma, with the fact I dropped so low on my FEV1 so quickly by so much confirms that I am very sensitive and also brittle. We all knew this anyhow but o viously with it now being on baby, its hard evidence against those twats that just dont want to believe. My lung function today was pretty reasonable for my (managing to get 1.81 liters of air out my old sacs with the first few seconds) I say for me because in fact, my highest out put of litres of air in the first few seconds is only, 2.05 and my lowest being 1.12. I should aparently be around 4 - 5 litres but I guess we cant have everything hey. She did say that it could be this high because I am on increased steroids but obviously we would never be able to know this.
I also got to meet up with my sister breifly, have a sneaky peak of the bump and I also got to see the 'baba' scan...and get a copy for myself...
Ok, so the meaning of this post 'reflection' is basically because with today being another lung appointment, another lung function and another lung discussion, it just shows me how precious my life is and how much I need to live it. Being re told again today that I do have uncontrolled severe brittle asthma really does hit home. It shows that can never be longer than an hour away from hospital as that could mean that day being my last. My consultant also mentioned how much happier I seem now with not living with mum and with being with my partner, and that everything she is doing for me really is helping me meaning im having less strain on my lungs. Although this again has really really scared me, I really do need to live each day as if its my last. This has also triggered my ptsd massively tonight because im scared ill never get to meet my sisters baby, let alone mine and my other halfs baby.
On positive notes with regards to 'reflection' having seen my niece or nephew in the scan (im saying nephew) it just reminds me just how much I want to be a mummy, and yes I am disabled, spend lots of time in hospital and live nearly every day in my wheel chair, it doesnt mean our baby isnt going to be loved and less, and not only is our child going to have respect for same sex coues, but they will also have respect for a disabled person. I have a feeling this child will be a perfect citizen in society and I cant wait.
Ok, so heres a bit if a battle of the thought tonight. Hope its not to jumbled, but sadly this is how my head is seeing it.
Im off to bed now as im what the dictionary calls= exhausted c:
TTFN
XXXX
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Ah cute scan pic!! Your old doc sounds fab. I totally get your fears and worries, but plenty of disabled people are great parents, so you will be too. I asked about the steroids because I'm already getting a lot of muscle pain, which is worrying me. I'm struggling mentally with everything today. I don't even understand why I feel so down about everything. Like you I've been having flashbacks and nightmares about being in ITU. I'm sure some of it is distorted not actual memories. Here's hoping we both feel better soon. Hope you sleep well xx
ReplyDeleteI was so chuffed to see the scan in real life so to speak as I couldnt be there for the first one so had it sent via facebook in private message, so this pic is staying with me no matter what!! My old cons was fab, I refused to let any of the other 3 consultant treat me as they all nearly killed me where as this cons really did just want to help me. I really do hope I can be a good mum, it just scares me that they will miss out because of me. Keep an eye on ur muscles, if u start to notice that ur struggling get out of chairs without using the arms for support or that u cant hold ur arms up in the air (like struggling to brush ur teeth etc) or getting alot if pain around ur pelvis area in the muscular bits, dont waste no time with getting refered to be checked for stwroid myopathy, as if caught early, it can be treated and managed. Aw massive hugs, I understand fully about struggling mentally, and as u cant tell from my blog, I literally have no way of controlling it, apart from desperately keeping myself busy. Definatly try and get some support for ur flash backs also. I got taught a technique called 'leaves on a stream' the video is on youtube and basically, when it states to, put one of the horrid memories or flash backs on the leave and watch it go down the stream leaving ur body and soul. Another one I have (because im and artist) is draw the flash backs on paper, and make them funny in some form and look at them every night and morning to remind urself that yes these event have happened, but u have pulled through and ur family love u no matter what. I got given these to try whilst im waiting for my lical referal. Maybe u can try. I think I have blogged a few of my pics, ill try and find the link for it xx
ReplyDeleteHeres the link to that blog I mentioned.http://charliewarlie91.blogspot.co.uk/2014/02/ways-to-cope.html
ReplyDeleteIve drawn more since but these were the initial few xx
Thank u so much. Your replies really help. I've noticed the muscles in my legs ache from walking up stairs and my arms ache from carrying just a few books! Most of my flashbacks happen at night when I start to fall asleep. But will def try the methods u've suggested. Thanks again xx
ReplyDeleteNo worries at all, glad I can help someone. Definitely keep an eye on ur muscles then just to be on the safe side. They will generally become weak anyhow with steroids as thats a side effect, but any worse and u should get checked out to be on the safe side. No worries about the methods, worth a shot if nothing else. I also started reading books that I could picture the scenes in within my head which gave my mind something else to visualize. This I also do pre bed l. Xx
ReplyDeleteHow do they test if u have steroid myopathy?
ReplyDeleteEach consultant is different, some doscans, others go on what ur telling them, others do a physical examination and some do a test where they test the electrical activity within the muscles. I got diagnoses by what I described and also physical examination. For examble, I had to lay on a bed and raise both my legs (I failed), I then had to stand straight, the bend forward and try and tough my toes (I got stopped by the cons and nurse at about 45 degress as I was falling flat on my face and legs gave way), I also had to get out of a chair using just my legs (failed again) and the last I can remember is sitting up from lying flat on my back with no assistance and no holding on and rolling (this sadly also I failed). So yeah, literally just depends on which cons in which department. Xx
ReplyDeleteThanks for that info. There's a few of those things I know I can't do!! How long have you been on steroids? What dose do you take? I'm now down to 30mg and feel like they're damaging my body really quickly!! X
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