I really didn’t think that I would even get the chance to start writing today, but finding myself up and awake at 5:30 am, thanks to Adams snoring exceptionally loudly, here I am. Actually, it’s not fair to put all the blame on him, yes, he woke me, but my stomach was telling me that I needed the loo, so even if I had managed to shut him up, I still wouldn’t have been able to sleep. In other ways as well I am glad for that earlier start, although I doubt I will be saying that by this afternoon. It is just touching 8 am and I have shoved through everything I would normally do for twitter and managed to get myself ready, so whenever that Ambulance arrives, all I need is my coat. It’s really odd sitting here knowing that I have my makeup on and my hair done, and not just my normal bed head design that prevails at this time of day. I feel like a different person. The entirety of this post is going to have to be done in bits, as I grab a few minutes in between the final touches required before we go, and of course, dependent on when that is, and when we get home again. I just hope it won’t be too bitty.
Something really odd happened last night, not with my health for once, but with my hands. I have been wearing rings on nearly all my fingers for most of my adult life, but the center finger on my right hand had four completely stuck on it. The last one to go on was actually a stupid thing for me to have done. I knew before I even shoved it onto my finger that it was going to be a tight fit, but I have for some reason got rather large knuckles, which means that the even if a ring is too tight to pass over, it will still spin around annoyingly once on. When I pushed it on to my hand, I did so as a way of keeping the other three still. At first it wasn’t a problem, I could pull it off with difficulty, but it did shift. Then I gained weight, need I say more. For at the least, it has been there for 9 years, but possibly longer. I don’t think I have lost weight suddenly, but for over a week I had noticed that my other rings were spinning more freely, so I grasped it and pulled, why it came off I don’t know, but off it is. I know this is a dipsy suggestion, but, could the fact I am using my wheelchair mean that my fingers are losing weight, if not the rest of me? It’s just an idea, but it’s the only one I can think of. I haven’t seen them for years, but I am sure they will be online somewhere, but I really need to buy some ring guards. They act like a spring fitting and let the ring pass over my knuckle then jump tight, holding the ring the right way around.
10 am. I really didn’t expect this, but we are home! Hospital visit complete and without the slightest hitch, if only it was always like that. We arrived at the hospital and were seen within 10 minutes of the ambulance drawing up. The doctor was really nice. She looked not just at the one I was worried about, but several others that are on my back and one that is on my chest. Apparently, I have Atypical moles. So I was right to be concerned about it, but in this case, there is absolutely nothing to worry about. She thinks that what has happened is that it had a slightly raised edge, and that edge was caught on something and been literally lifted it off my skin. Which made no sense to me at all, as I never wear a bra or tight clothes. I am also very careful about how I scratch my back, I have in the past caught moles with my nails. The more I think about it, the more I think I have the answer. Like most people, when I first lie down at night, I shift myself side to side until I am comfy. I am guessing, that that side to side shifting has been slowly lifting it off my back. Neither Adam or I thought about it at the time, but I have been left with the concern that it is actually going to continue separating itself. I have the horrific idea that one day I will wake to find it left on the bed behind me. She did say that because my moles are Atypical, as in they have raised sections and lumps in them, that we need to keep an eye on them for any changes. The fact that I don’t go outside isn’t enough, unfortunately, it is another one of those age things. At this second, we have nothing to worry about.
I couldn’t believe how smoothly the whole thing went, not even the stair-climber was as violent as usual. We were down and back up in a fraction of the usual time and I didn’t feel sick, not even for a few seconds. I know that it was only luck, but when we returned to the room where you wait for your transport home, the crew that brought us there, were still sitting chatting to the receptionist. They were waiting for a patient to come down from one of the wards. One quick call to their base and we were also on their list to take home. I had been so prepared for the fact that we would be sat there for hours, that I was sure that any second they were going to get a call back saying they couldn’t take us on the that run for some odd reason. But, no, we were off and home within minutes, if only it could always be like that. Fingers crossed, our next trip at in November will be just as smooth.
Over the last couple of weeks, I know that there have been quite a few people concerned about me due to this blog. Firstly, please don’t worry. What I have been writing in here is my inner self, my gut reactions if you like to life. I am very aware that lately my writing has been on the dark side, this doesn’t mean I am slipping into depression. When you have led a life like mine, there is a lot of darkness boxed all over the place. In normally work on them privately, but as this one is 100% about my health, it felt right to put it here. After all, the whole point of my blog is for the absolute truth of what chronic illness does to someone. It doesn’t matter what condition you have, the physical effects of them, is less than half the story. There are so many emotions that go with it, and I hope that they have all been shown. It is one of the reasons that I began to write this. You can search as much as you like, but nearly all information available about chronic illness is about the symptoms. Even then, the majority of them only tell you the basics of them. I wanted to know how they felt, what they did to your life, the true impact, not just their names. If you read back to the beginning, you will find spells like this showing up throughout. This one, though, I admit, is deeper and darker, but the phase I am moving into is the darkest I have ever had to face. Without a doubt, one of the dangers of chronic illness is depression. I have always believed that the fact I am so aware of the dangers, having had it in the past, that I should be able to control it. I don’t doubt there will be spells of it as things progress. The idea that I can go from where I am, to my final destination without it, would be ridiculous. I doubt being bedbound, will be a bed of roses.
I have made a point of always working through whatever my brain decides has to be faced. The worst thing I believe that anyone can do with anything, is box it and nail it down, that is the start of all danger zones. Yes, I do box things, we all have to, but I never put any nails in anything. My mind is free to demand that I deal with anything whenever it wants, just as it did the other day with that unwanted image. I also make space most days to deal with those thoughts I packed away for when I had time, I make that time. It’s a couple of years ago now, but I spent several months, just going back over my life and dealing with all the anger, I had inside towards people who had hurt me. I am not the sort of person who finds it possible to hate, no matter what anyone has done to me, I just can’t do it. I can, though, get angry and I had to get rid of it, that’s just what I did. I even forgave them all while I was at it. For me, it was the best thing I have ever done, that didn’t require either money or activity, and I would recommend it to everyone. Peace of mind is a precious thing. Dealing with all that ancient junk, also somehow how, helped me adjust into my new life of being unemployed and housebound.
I have gone from independent to being in need of total support, including life support. Without my wheelchair to get me around, well I would need 24/7 care and too close to bedbound for my liking. Without my nebulizer and my other inhalers, which all have to be used at least twice a day, I would find breath harder than anyone wants. Without being able to breath, well, we all know the answer to that. Mentally, it is actually a bigger adjustment than any of the physical stuff that goes with it. It is both easy and stupid to say, just get on with it, what is the big deal. My first time round using my wheelchair years ago to get around outside and in the office was a get on with it type of situation. I could deal with it with ease, as I saw it as no more than jumping in a taxi, to get me from one end of time to the other. I got in my wheelchair to get me from one end of the building to the other. But in small spaces, or at home, I was still able to walk as my problem then was fatigue. This time is different. This time, I don’t have legs any longer that can hold me up, they collapse, disappear and leave me stranded. This time, I am no longer a complete and normal person to look at, no matter who sees me now, they will see someone in a wheelchair. That is me, that is my new normal and that is a huge mental shift, and all of that has to be in here.
I know it is painful and heavy going for some to read, but I hope one day that someone like me will be able to read it and say, “I too can get through this”, that is the point. Right now, I believe that I am stepping through all of this quite well. I have thought several times, this it, I am there and I am myself again, then my brain disagrees and bang, I’m back walking through a forest, where every tree has thorns. It’s up to my brain, not me what you’ll find on these pages, every day is an unknown adventure when these pages are opened, not just for you, but for me as well.
Please read my blog from 2 years ago today – 19/10/2013 – Finding hope
I have always had the misconception that life was actually meant to be simple, I don’t know who told me that or why I have managed to got it so wrong, but still to this day I have a small section of my mind that won’t let go of that wonderful but oh so wrong…..
You write what you like.
Having begun a similar journey myself, I agree wholeheartedly that there are very few resources about your disease or my own that deal with the emotions of adjustment.
It’s so tiring to be the bandbox princess, always perfectly coiffed and ready to be admired, instead of the real person that we are.
Thank you for sharing your thoughts. It helps alot, even if we are fighting similar but very different battles.
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DON’T EVER STOP WRITING THE WAY YOU DO. HONESTLY AND WITH GREAT DIGNITY AND MUCH RESPECT (FROM US). I’M HAPPY THAT YOUR MOLE IS FINE AND THE DAY WAS NOT THE NIGHTMARE, THAT HOSPITAL VISITS USUALLY ARE FOR YOU. OH, THE RING THING ; YOU ARE RIGHT.WHEN I DO A LOT WITH MY HANDS MY RINGS SLIP TOO.