To tell or not to tell?

I haven’t shed a single tear and I have been up now for 4hrs, so I think I am on the right track again, I knew I would get there but well it’s hard to heal yourself when you know there is no true recovery. I am only guessing but I am sure there are thousands of people out there who have or will go through exactly what I have just done. I am sure that my skillfully built cocoon contributed to it, but I still feel that it is probably the best place to be. When you have to live in your home, in just a couple of rooms you have to make it a world that supports and protects you. Without all the safeguards that have kept me going for years now, the perfect little world that I can deal with and doesn’t challenge me hourly is important, but I think I may have done my building just that little too well. I love the idea that I can sit here in my crystal tower, safe from the outside world hurting me and challenging me, but I can also see now that not having people who show you what is wrong and what is getting worse, may well not be the best way to live.

It is partly by design but partly because I have so few people still in my life, who actually come in and make me realise and face up to the fact that things are worse, that I haven’t been just coasting along level for months and years. Although Adam is here he doesn’t see it fully, he is here everyday so the slow slips downwards are just another day not a point to be noted. I also think if he did notice something he probably wouldn’t tell me anyway, thinking he was protecting me from by saying nothing. It is a hard one I suspect for all carers, do you tell someone that their speech is worse or not, is it helpful to do so or harmful, is it going to sound caring or feel like an attack. I guess that it is not easy to know what is for the best, and that it will be a growing issue as time goes on. I actually don’t know the answer to that, I think at the minute I would deal with being told things are worse, but as the damage increases to my brain will I be able to deal with it or react badly in the future. I put so much on Adam already but as time moves on, he will be the only one who can say this is worse, this is better, and he is the one that will be the one who not only tells me, but also the doctors. There isn’t an easy answer, I guess it will be something he will have to judge, can I or can’t I deal with any given situation. For now though I feel more in control, stronger and more able to make a day be a day not a trauma.

I am really glad that I am getting some control back not just because I didn’t want to spend the rest of my life an emotional wreck but I have my next hospital appointment on Friday to see what they are going to do about my Gallstones and what if anything has been found in the rest of the test. When I was there a couple of months ago I never thought that I might have gallstones, to be honest it wasn’t even on my medical radar and the pain and pressure feeling it causes were and are, lower on the list of problems than the terrible gut spasms I keep getting. I have all to often found that I am worried about the things that Doctors see as nothing and they are worried about something you mention in passing. I have waited a long time to get all this sorted out but I really wish now that it wasn’t this week, it seems all too much to deal with, bad timing as life often is. No matter how much I have slept in the past few days I never seem to feel any more rested after it, than I was before, getting up at 6am to be ready for the ambulance to collect after 8am is going to be fun, but it has to be done, after all I have only had this problem with my gut since December last year. 11 months of doctors and nurses tinkering round the edges and getting no where, well I have had enough of it, I need answers now not just ideas of things to try and see if it makes any difference. I just hope that this time we get closer and not be either sent of for more tests or sent home to just get on with it. Before any of that happens I do actually have to pick up the phone and book my transport to and from the hospital, well after all I have only had 2 months in which to do that and it still isn’t done. Time to make a phone call I guess.

Turning point

Sometimes things seem to happen for a reason, although those reasons aren’t always clear to start with, like loosing one job and actually landing up in a better one, an example of events that all of us have been through at sometime in our lives. I don’t think we ever see things as good, at the point they are hurting us, as they say hindsight is wonderful thing. As we grow older what does happen is we learn, we learn that nothing is actually as terrible as we first think it is, for me I can say the same about having MS. I think when I was first diagnosed like most I thought it was an almost immediate death sentence and that my life was over. I honestly don’t know what Adam thought at that time as I was hurting and confused, to to great a state, to be able to think about the effect on him. To me that now sounds terrible, I can’t believe that I was so self-centered and so self-possessed, that I didn’t think about him at all. Thanks to me wonderful memory I can’t even remember when it was that it happened, but I do remember a conversion where for the first time Adam broke down and really spoke to me about how he felt and how it was effecting him. We are both the same when it comes to talking about serious subject, we are avoiders, if you don’t talk, you don’t have to admit it exists. OK that is not always the best way to sort things out or to live your lives but it is just the way we both are, but one evening the walls all shattered and we spoke, we spoke from our hearts and the pain flowed out of both of us.

That was several years ago, but it was his declaration that night that he wasn’t going anywhere, that was to me a turning point. Although I loved him with all my heart and he said the same back to me, we had never before talked about the change that MS could have on love. Adam is 17 yrs younger than me and when we married he wasn’t if you like signing up to be a carer, I was very much young at heart and as if not more energetic than him, so I was scared that he would run away from me, not because he no longer loved me but because our entire lives and been changed by two words, Multiple Sclerosis. That conversation really did change things in my head and knowing, having it actually said with conviction and my having my doubts swept away changed a lot for me. I was suddenly free to put my energy into dealing with my illness, free to be honest about how ill I was on bad days, the feeling that I had to pretend I was OK, because it might be too much for him to deal with, was shattered and I was freed to really learn about, experience and understand my illness, even when he was there.

It was a major change in everything, if you are acting out what you think others can deal with, you are so busy doing that, that you don’t learn because in a way you are also hiding it from yourself. I had to do that all day long at work and I had been doing the same at home. For the first few years I was in living in fear of loosing everything my job, my husband, my life, suddenly I only had one that required me to pretend I was fine and that was work. I have said it before and I will probably say it again, getting to know your own personal illness is the first key to being able to live well and live a true life, not just a pain filled existence. I now knew I had his support now, and I felt free to talk to him, checking if he had noticed something happening or was it in my head that I was blowing it out of proportion. Having another set of eyes and another mind to work on the things that were happening was a huge boost, not just psychologically, but also physically, I didn’t worry about asking him when I truly couldn’t do something, to help me, nor to asking him for physically support when I found myself marooned in the knowledge that I was dizzy enough to fall but too far from somewhere to sit or lie down.

Reassurance that someone isn’t going to leave you, that they are committed to you regardless of and in the knowledge that they will have to be a carer and carry out all those embarrassing things that you never thought of, is probably the most important thing you can have. It doesn’t need to be your partner, we unfortunately aren’t all as luck as I am, but that commitment from even your family is incredibly important to have. They may think that you know without asking, they will be there for them, WE don’t KNOW. When you have had your future destroyed by a chronic illness you can’t take anything for granted from then on. I expected to work in an office dealing with statistics until my retirement, I expected to be able to do simple things like go out for dinner, go to the pub or visit friends and family. Nothing I had taken as my future was now there so why would my husband even want to be around to witness my demise? I need to hear the words and to any of you who are carers, partners or family of someone with a chronic illness I would ask you to vocalise your commitment, don’t expect us to know, everything we knew has changed, we need new expectations to replace the old and we need to know it 100%.