Yesterday should have been a really good day, as I got the long awaited letter from PIP. Yes, I know that the assessor told me that there shouldn’t be a problem, but you never really know. Well…….. OK, she was right. Not only have I been awarded what I had been on before, they have actually increased the amount by over £100 a month, much needed now that we have the bill for the carers to cover. Without a doubt, it was the high point of the day, one that didn’t actually start well at all. It happened again, a second night where I soaked the bed through, and just as the first time, I was totally unaware of it happening. I woke for no reason I could find, to discover what had happened, and the guilt started at that second and lasted the whole day. Adam has taken a few days off, with the idea of just relaxing and resting, instead, he spent it washing, tumble drying and shopping for incontinent towels as clearly the towels I had in the house for leakage, just weren’t up to it at all. I had hoped, they would see me through to our next shopping day, when I could discreetly purchase some pads that would supply more safety.
I know that Adam is from a different generation, he doesn’t bat an eyelid at going to the supermarket to buy such pads for me, but I come from a generation which meant asking him, was incredibly difficult. When you have been brought up in a world where women don’t have periods, nobody goes to the loo or passes wind in front of another and only babies need nappies, a lot of things don’t come easily. My embarrassment meter has been way of its highest scale now for several days, but it still didn’t make it any easier. He set out from here after I had shown him the most common brand online, so he could find them with ease, even he admitted it is an aisle that he really doesn’t hang around in. He totally surprised me by coming back with not just the two different sizes I asked him for, but even a totally different brand as well, so I could see which suited me best. He surprises me all the time with acts like that. He has told me so many times that he wants to do more, to be more involved in my care, so that my life can be made easier, and it has been me over and over that has blocked it. Not just for those reasons, but yesterday would have been impossible without him.
I had to phone the doctor again yesterday morning, as I had noticed over the last few days that my feet had been badly swollen, not just their normal puffy, but grossly deformed with fluid. It was so bad that they were actually painful and when I did the press test, the crater left in my upper foot by my knuckle, took ages to refill. They didn’t just not feel like my feet, but I was also for the first time quite sure, that the swelling went all the way up my legs. When I woke in the morning, they had only gone down a little, and my hands were now so swollen that my rings were cutting in. I take Furosemide already, 10ml dose twice a week and a 5ml dose in between. Normally that is enough, but it’s not touching this at all. He has increased my dose to 40ml for the next 5 days to see if that helps, plus he is sending the district nurse out to take some blood, just to rule out that anything else is happening. As soon as I spoke to him, Adam poured out the top-up amount as I had already taken some earlier.
No matter how much fluid I passed, my feet kept growing. When I switched off my PC at 6pm, they were killing me. The pain just kept increasing and I didn’t know how to sit any longer. It was Adams idea that we tried walking to see if I could break up the spasms that were appearing all over the place. We slowly walked back and forward the length of the living room. I held his hands tightly as he walked backward and I wobbled all over the place. It didn’t work, the spasms kept coming. Out of desperation, we decided to take my socks off. The ones I am supposed to wear as I am at risk of a deep vein thrombosis. It worked wonders, socks gone the pain subsided, as long as I didn’t try to stand. The skin on my feet was pulled so tight, that they felt as though they might split. My feet looked worse than the night before. This morning, the problem hasn’t changed the slightest, they are still swollen and already painful. Despite the Frusemide I haven’t really passed any urine at all this morning, I’m just hoping the nurses will be here today, so they can see what is going on and report back to my GP.
I really don’t know how I would have gotten through yesterday without Adam being here. It was one thing after another, including yet another argument with our internet provider. Emotionally, I would have been a crumpled mess, physically a total disaster and there was no way, I could have washed all the bedding yet again, I’m still recovering from the first time. The good news there, the bed and I were dry this morning. So much went wrong yesterday, that not even the good news from PIP really got greeted with the joy it should have been. You could look at yesterday as mainly bad, mainly filled with stress and overpowering emotions, not the good sort, but it wasn’t like that at all. Yesterday taught me much especially about Adam and his commitment to caring for me no matter what it entails. Yes, I know the words have been said again and again. Yes, he has shown it by taking on so much and already doing so much for me, but yesterday was different. Yesterday was a full on “me” day, from start to end, and not once did he pull away from, or seem begrudging about his involvement. He showed me nothing but caring and understanding throughout. We haven’t had to live through such an intense “me” day, to date, the worst have been bullet points in a week, those bullet points became hourly yesterday. There is a huge difference in someone saying, “Don’t worry, it doesn’t matter what happens, I here for you” and them actually having to live it. I never doubted him, not at all, but I somehow I didn’t expect the total grace that he handled it all with. There wasn’t a single sigh or face pulled, none of those things I am used to seeing and hearing when he’s asked to do something he rather not, right then, or sometimes ever, but still he goes ahead and does it. Yesterday was totally different, and in an odd way, I’m glad my life went mad and it all happened as it did because it has shown me just how committed he really is, when it comes to being my carer.
Please read my blog from 2 years ago today – Becoming desperate
Last night turned out to be the worst evening I have had for a while, I just didn’t know what to do with my body. I spent the entire evening trying to break the feeling in my muscles, they were tense all the time and no matter what I did, there was no relief at all. Trust me I really did try everything, I stretched them in directions I didn’t think possible to twist my arms into, I pushed again solid objects, I pulled…..
You are so lucky to have Adam by your side
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I don’t have the slightest doubt about that one 😀
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Firstly all best to you and Adam with all info you disclose on here it needs to be heard loudly. Money obs helps but care and love like this is exceptional. This is an excellent post on your strength between you both. X X X
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Thank you, You can fill yourself with all the drugs in the world, but without support, you may as well take none of them. Without his love and our partnership, I honestly don’t think I could have made it this far. xxx
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Hello, you sound much brighter even after all the tribulations and I am happy for you.Do you know there are some catalogues that sell things like pads and equipment and waterproof mattress covers etc all less vat if qualifying and you must do.They are/can be delivered in the post.Iknow Adam doesnt mind neither did Mike but I felt better not having to ask him to do one more thing. Half the time I think I make matters worse because I resist asking all he says is just tell me how to help you.I and you are so lucky to have the men we do have,especially when it wasn’t what they signed up for!! Sending love and thoughts.Nancy.
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Thanks Nancy, I have in fact found a company on line which is exactly as you describe. I placed an order the other day for the pad for the bed, it quite simply hadn’t arrived at that point. As for the pads Adam went out to buy, well I can actually buy them from Asda and I am hopeful that when I see the continence team, that they will supply me with the free ones, if not, I will be back to the VAT free site.
We are without a doubt, lucky to have met and married such gems. I don’t have clue how I would have managed with Adam.
Take care (((Hugs)))
Hello again. I m pest in more ways than one.. ha ha. As you know I have same issues you have to sort and no time to put off our partners are involved to. Just thinking about you water issues in all ways. I do not take frusimide but know about it but that’s all .
Well yesterday I had an agreed pop in as soon as possible from continence nurse re urine accidents.on the phone she said she did not know I was more or less housebound and said I be with you next week. Lovely she was and waited am whilst I looked presentable in bed, I felt she was on it easily got my point. I have charts to fill in and a prescription written for what we expect I ll need all prob if right to be put in process on Tue when she comes back. She’s ordered me special piper like washable Knickers eeeeeek. She consoled me as saw look of being horrified. So hope to wadn you about these Knickers! I never have dreamt this even…..I let you know. Hope things get sorted so things are easier but it’s a journey and a half. Hope you don mind me replying so much. You pack loads in your post ((( hug))) gentle hopefully to make you laugh a bit too.
Not piper I meant some sort of paper Knickers/pants.
I actually found these pants online, they apparently have bamboo in them as well. The ones I found on the site, struck me as expensive and only dealt with light leakage, but they may come in other strengths as well. You and everyone else is more than welcome to leave comments, so don’t worry about that. I hope what she returns with is exactly what you need. It will be interesting to see what I am offered, as all NHS areas supply different things. 🙂
So glad you have someone like Adam. It is so hard having to depend on someone else – – being dependent and not independent, I mean. I think I hate that most about being chronically ill, but the humbling is always a great teacher and grower of my character, isn’t it? It does help to have someone who really cares for you.
PLEASE PUT YOUR FEET UP, WITH A PILLOW UNDER THEM.DRINK AS MUCH WATER (OR TEA), IF YOU HATE WATER. I GAINED 40 POUNDS IN ONE WEEK,AND HAD DUCK FEET.VERY PAINFUL.I WAS TOLD TO DO THE SAME THING; AND WITHIN WITHIN A FEW DAYS; I WAS BACK TO MY NORMAL WEIGHT. PLUS A LOT OF LOOSE SKIN.EDEMA CAN KILL YOU. ASK YOUR DOCTOR. YOUR KIDNEYS NEED TO BE FLUSHED; IRONICALLY, WITH WATER. P.S COKE .COLA DOESN’T COUNT AS FLUID. I’VE SAID THIS MANY TIMES “YOU ARE LUCKY TO HAVE ADAM”” WE ALL NEED ONE. TAKE CARE OF YOU. YOU ARE NO. 1
It is the Consultant who has said this is what I need. My GP agrees, as the only other option is a stoma and I don’t want one of those if there is any way of avoiding it.
The District Nurse, my GP and I, all think that every second day, is too much, but we will see. It is all trial and error until we get the right levels and the right one, as we’re not even sure about the one the consultant suggested, but we will see.
It’s good to see you here, even if it is just every now and then. I had hoped that you might be showing signs of improvement, so take it easy and find your way back fully. I hope it won’t be too much longer.
Take care (((Hugs)))