No post yesterday; it was a long and exhausting day and by the time we got home we were about ready to find a book and go to bed.
It was 'visit to the Big London Hospital for routine clinic appointments for me' day; rheumatology because I have scleroderma, and cardiology because the scleroderma has caused pulmonary arterial hypertension (amongst other things). The scleroderma is stable - whoop whoop - and the PAH remains mild - whoop whoop!
However it has become increasingly clear that I need to have more oxygen support during the day now, as well as just overnight.
Scleroderma is a progressive auto-immune disease, and it has done most of its progressing in my lungs. I've known this would happen from the start, way back when I was diagnosed in 2001.
I reached the stage of needing night time oxygen in 2013, and I could have cried, (OK, I did have a little weep) but it is surprising how quickly you get used to things.
So this time round, I'm actually a bit pleased. Having more oxygen during the day will make such a difference, in a good way, like giving in and getting glasses or hearing aids, getting a walking pole, accepting help with lifting and carrying.
Low oxygen levels, as thet get lower and lower, make me feel tired and grumpy, and then sad and tearful, and finally panicky and about to die! So once I am sorted with official daytime oxygen support I won't have to focus on breathing deeply or bite my tongue from making grumpy and cross replies all the time.
I think my husband will be relieved too - he knows I don't mean to be grumpy, but even so sometimes his armour gets dented!
I'm sure its not really 'grumpy', maybe just anxious? I do hope you will be helped by the extra oxygen.
ReplyDeleteI call it grumpy; it's actually being short-fused because I'm breathless and can't properly explain what I mean and then get even tetchier when the poor man gets it wrong! 'Anxious' happens when I'm gulping for breath, when I simultaneously with berate myself for being such an idiot to have done whatever I did that got me into this state! We do our best, and he's very, very patient.
DeleteI remember my Mum struggling with breathing, and being a little short with us. It was not easy to cope with (for her or the family) Grateful for the love which kept us going. Praying you two will continue to bear with things ❤️🙏❤️
ReplyDeleteDid she ever have oxygen support at home? I have to say I am surprised to find myself looking forward to it! I'm hoping it will make a big difference. Thank you for your prayers.
DeleteI'm so impressed with all that you do - the teaching, gardening, creating, blogging - given what you're up against physically. Hoping for better days for you with the increased oxygen.
ReplyDeleteThank you - I'm lucky in that I've never been 'sporty' so I'm not missing things like marathon running, swimming or energetic keep fit classes! Quieter, sitting down activities have have always been more my 'thing'.
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