It’s is amazing how the second you know someone is coming to the house, you suddenly see all that mess and dust that you have managed to turn a blind eye to for months. Jake phoned last week and asked if yet again I could bid on another cymbal for his drum kit, I am sure now that he only asks me to do it, not just because I am here for the postman, but it also gives him an excuse to come round to the house. I don’t see anything like of much of him as I used to, but he is the only friend that I still have who even bothers to phone me now. It isn’t only my illnesses that are invisible, it is also all those people I once called my friends. His parcel actually arrived a couple of days ago but I knew his work schedule for this week and that today was planned as his day off, so he wouldn’t be here before that, so I phoned and left him a message last night. When he called about half an hour ago to say he would stop by this morning, bang, I say everything that was wrong with the house. I have managed to sort out one of the throws on the small settee, but that alone drained my arms of all strength and left my legs feeling like they would collapse any second, clearly I had no choice but to leave the house as is and once again start with an apology as he enters the hallway.
Jake and I have been friends for over 20 years now, so if anyone knows just how house proud I am, well it is him. I also know that he won’t say a word or even give it away with a look that our home is less than perfect these days, but that won’t end the feeling I will have of disappointment and shame when he sees it. No matter what our health does to us there are always some thing’s that will never change, some thing’s that have been part of us from almost birth onwards, that neither I or it can change no matter how much I wish I could. It may not be a symptom of any illness or even listed as a side effect anywhere, but believe me, there are a million and one things that should be and pride would be up there near the top. I have lost count of the times that I have felt true shame and embarrassment thanks to my health. From the obvious ones like when you fall or wet yourself in front of others, to apologising for the state of my home and the mess you actually appear to be yourself. Pride is the thing that I am sure is the greatest victim of illness as being proud of anything is almost impossible, as there is little left of the things you were once proud of. That person in the mirror isn’t me, this room I am sitting in is mine, this world I live in no longer the one I built, I loved or I was proud to invite others into to share it for a while.
There are so many things that just don’t occur to you, or anyone else it seems that being ill will take away or change, even things as deep as those items that define you as a person. I am as guilty as everyone else out there in just thinking that people who became ill or disabled were content in their lives, that their lives were no different from mine other than by choice, all that had really changed for them was their health. I would see someone in a wheelchair and I could see no reason in my mind why their life should be any different from anyone else, or why they couldn’t live in a pin perfect home like mine if they wanted to. Now I can see just how wrong I was. Until you live with a chronic illness it is almost impossible to understand why there might be a thick covering of dust, or the house not being redecorated for years. When I saw the odd thing on TV that showed part of the reality, I always put it down to either depression, lack of money or they were at heart the type of people who just didn’t care, who weren’t ever the sort of person who couldn’t stand muddle and mess. It doesn’t matter what type of person you are, it makes no difference in any way, if you don’t have the energy to just stand for 2 or 3 minutes, you don’t have the energy to keep your home, or any other part of your life any other way.
I can hear the odd voice out there wondering about what Adam does around the house, well he tries to do everything, but he was never house proud, never the type of person to actually care if there was a pile of CD’s sitting on the floor or the washing hadn’t been put away for a couple of days. On that respect, we have always been totally different, he does his best, but unless he spent every spare second he has at home cleaning, our home would never come up to the standard I want. I have adapted, stopped having panic attacks and bursting into tears out of sheer frustration because of the way things look, I have learned to be at ease with it, to accept in day to day life, this is just the way it is, but then there are days like today, days when I see it all.
Pride is an emotion, a feeling that actually has no purpose but to make ourselves feel good, but it is just one of many that illness picks away at, you don’t notice it at first, you don’t feel anything happening, but it will get you. Just as surely as the day came that I landed up in my wheelchair, the day was written waiting to happen when pride would just have to take a back seat. Others like self-esteem would be destroyed and rebuilt over and over, as I lost different abilities, different skills, I always worked on finding something else I was able to do, to rebuild it around. That is the process that keeps you sane, you can rebuild, it doesn’t matter what it is, if it is within your control, you can rebuild those feeling, those motivations and yourself. But when you can’t do anything about it, when you have to rely on others, when you can’t even help any longer, well those are the areas of life that you can gloss over for just so long, just like a volcano they are only silent waiting for the day when they will explode all over again.
Please read my blog from 2 years ago today – 14/05/12 – The effect of people
You would think once you have an illness like MS your time would be spent mainly trying to keep yourself as well as possible and learning how to handle all the different symptoms, that would be a logical course of action, but life isn’t logical. I touched on this yesterday when I mentioned the standard reaction from others when you fall in a public place, but that isn’t the only reaction that makes it just that bit harder to handle. Once I had gotten over the initial shock and grieving process….