Tuesday, 11 February 2014
Bad news. Consultant rang an hour ago to say that the bloods were worse again. They don't know whats set all this off or why the steroids aren't working, but have now increased the pred to 40 mg daily from tomorrow. I'm so fed up. I won't be going back to work next week after all, and fear I will now lose my job. More bloods again Friday and back to clinic on Monday. I hate not being able to plan anything or know what the future will hold. It's all out of my control and there seems to be nothing I can do about it. Healthy veg/fruit/nut/juice diet out the window in favour of cheesecake/biscuits/cakes and all things steroids demand. Skin appalling, weight increased, joints and URQ pain. No stamina or energy despite steroids. Want to stamp my feet and have a tantrum
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Penny this is really hellish you having to go through all this again, I know there is nothing I can say to make you feel any better but I do believe the high doze off steroids will do the trick , you responded well before and I've no doubts that you will again, you and I must be in the same boat as far as feeling rotten goes, I have been really sore for a good week now and it just seems to be getting worse not better, it's my right and left sides and round to my back that is playing up just now, I can't get comfortable in bed and I've taken to sleeping with a pillow at the bottom off my back for some support, I feel worse now than I did before going into hospital and I feel like I've become a mad woman again constantly checking the colour off my eyes and other things if you know what I mean, I really hope we both get a break soon and things start going our way , take care will be thinking off you xx
ReplyDeleteI do feel hellish...and I know what you mean about turning into a madwoman checking everything! Im so sorry you're still feeling so bad. Has the nausea settled? When are they seeing you again? I've given up and taken to my bed today feeling sorry for myself and so tired, I just can't keep up all the positive pretending anymore x
DeleteGetting bloods done weekly starting yesterday but don't get seen in clinic until 6th march, the nausea is about the only thing that has settled and I know what you mean about the healthy eating out the window, am just eating what I feel like cause I need something nice, your right the positive pretending really gets to you after a while, I know we are only sparing other peoples feelings but what about our feelings, people need to understand how bad this is, my sick line runs out in two weeks and I've no idea what am going to do, keep cozy in your bed and just look after yourself. Take care xx
DeleteBloody awful for both of you, I am so sorry and gutted for you. I also think the higher steroid dose will probably do the trick and it maybe that they increase it more in order for it to kick in. I think bed is the best place with the occasional walk round the bedroom to help with the aches etc! Eating healthily is the least of your worries at the moment and tasty treats should be compulsory, you can worry about all that when you both start to recover and feel better. This is a serious illness that makes you feel really lousy, I remember it well and know exactly how you are both feeling. It is frightening and daunting but once the meds kick in, you will feel gradually better but it is a slow process. I was also that madwoman, bonkers actually! I still check my eyes and ask my husband if I am yellow if I have a day when I feel unwell and I was diagnosed in Nov 2011 after a year of ill health. I really believe that the way forward is to give into it until you start to feel better and just do nothing except to keep your mind busy. I will continue to hope for better results for you both and hope that you start to feel brighter and better soon. This weather is so awful, I am in SE kent and it feels like the house is going to blow down. Hope it is not too bad in your parts of the country. With love Jo x
DeleteHave just eaten a huge slab of lemon drizzle cake.........feeling better already!Weather in Cornwall pretty grim, you can't stand up in the wind and roofs/windows rattling. At least we are high up so no flooding, but the donkeys are wading in mud and it seems to have been raining forever. Hows Scotland Colleen?
DeleteScotland not to bad at all, a bit off snow yesterday and rain all day today,no wind as yet so that's something to be gratefull for, I've just come back from having tea at my mums( nice to be spoilt) my niece and nephew were both there and as I was taking my medication at t time my ten year old niece asked me if I was ever going to get better really didn't know how to answer her, I've been a mad woman all day expecting the phone to ring with bad news as I had bloods done yesterday but so far so good, by the way I love lemon drizzle cake with a big mug off tea, going to get an early night but it really doesn't make much dufference
ReplyDeleteGlad you gor spoilt! I know what you mean about knowing what to say. I tend to say things like "I'm getting there" or "doing much better than I was but it's slow". Of course that was before this week!!!!!!
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