A new week so here’s hoping that it is also a new start with changes in it’s wings, well as long as they are in the right direction, lol. It was a kind of strange weekend, almost like it wasn’t one if that makes any sense. Adam was here as always but the entire two days just seemed to pass without any impact on me. I got up, I wrote, I slept, I watched TV, I ended my day in bed, then I did the same again. Life can be like that occasionally, I suspect some will say well that is all you ever do, correct, but from what I write I hope you understand by what I call impact. Days have a value, a depth and qualities that set them aside as individual, just as they do for those in a working life, well it doesn’t end when you shut that front door for the last time. I have wondered in the past if those who find it hard to adjust, are those who feel they have lost those quality levels to their lives, it is only when you realise they are still there, just different, that the adjustment to housebound becomes possible. I don’t think I have in the past directly addressed the initial adjustment process, yes I have spoken about what is required to keep yourself sane and about how important routines, goals and achievement is, and how structuring you home as your sanctuary or personal cocoon, along with a lot of the smaller day to day living issues and solutions, but that first few days and the early months, no I haven’t been there at all.
I was so lucky to have a gradual adjustment, with me still working from home for several years before the final break with the outside happened, so I had already shifted some of the components that make a day, a day, into my housebound life before the final cord cutting. I had the structure of getting up and doing things, of setting goals and making achievements without going anywhere. If you become housebound and loose your job at the same time, I can see clearly that the first morning you wake, you will instantly go stir crazy, what are you going to do, how will you fill these long days, who are you going to talk to, what is your position in the world, what is your value, your worth, who are you, just a few of the questions you have to settle in your heart and mind before you can even start on making a new life. I had sorted the bulk out over those years of working from home in all those weekends I had to get through, two days a week of adjusting, 5 days of working in total contact with the outsider world, before jumping back behind the closed doors again. So how I worked through it may be very different to many, although saying that I think most will have a slow down period where they know it is coming and may cut their working hours before stopping all together.
I expect that 90% of us who eventually move out of the outside world, actually know it is an inevitable that they will be housebound, and I have before recommended setting up your cocoon well before you get there, while you have the finances to make it a place you are happy to be in, not just a place you sleep and run away from daily. They are two very different places, trust me on that one. During that building process you will also be working through many of the feelings that you will go through. Just like when you first got your diagnosis, becoming housebound requires a period of grieving, no one will make the shift without it, so be ready and be prepared to have everything else settled so that you can grieve. Grief is an important step and you can’t move on without it, so if you sit and cry for a few days, well all well and good, scream the place down if you want, but be ready to time cap it, give yourself a date to start living again and stick to it. Have all the investigations of how you will cope financially already done, have those phone numbers to call, know what forms you will need to fill and if possible, have those forms ready to post, but remember governments change these things far too often, so you may need to request new forms. Have all this information in a folder along with all the telephone numbers for any other agencies that can assist once your working life is over, there are more than you may think. Check out the charities in your area who may be able to arrange help that you never imagined was out there, you have nothing to loose other than the cost of the call and if they themselves can’t help, well ask them if they know anyone who can. The help can range from housing, equipment, carers and visitors if you want them, if needed you can also get help with chores you can no longer do, like decorating and so on. That folder is your peace of mind at the start, if you have it, you are not going to become distressed by the simple to fix problems. Although I had it on my PC, I still hit problems, but I had the right people there to get me through them, I still got frustrated by the system, but I wasn’t sat here feeling that everything was over and there was no way of moving on.
So life has to go on, what do you do, how do you do it, what is going to make this new life, because that’s what it is, how is it going to work for you? Whether or not you are a person who likes labels, you will of had a title in your work life, something that told not just others but you, who you were. Personally once I had accepted that I wasn’t going to work ever again, and that I couldn’t spend my entire life playing on line games, I then relished the chance to yet again rebuild myself. I had done it before when got I divorced, so I knew I could do it again. You don’t need a title but what we all do need is direction and I think that is something everyone needs. Working out who you are now may sound a bit airy-fairy, but it is important, we all need that focus and the difference now is that it all has to come from you. You know longer have people around you telling you who you are, reaffirming your intelligence, asking things of you, giving you the feedback needed to give you confidence in yourself and who you are. All of this has to come from you, and that is a huge ask at first. That first goal you set, which for me was to start blogging, is a monumental because you don’t know if you can do it, if you will be any good at it, or if it will fulfill all those things you lost, but you have to start somewhere and you have to try. The beauty of this new life is that if it all goes wrong, no one is there to put you down for it, the only person who sees it is you, so what the first thing didn’t work, well try something else.
Being housebound is about self reliance, self assurance and self belief, and if you didn’t have them before, you will learn them, as you have to. I am not going to sugar it up, those first few months are hard, I went through every emotion I can think of. I went through soaring highs and devastating lows while I sorted out the simple thing of who am I now, but you have to stay focused, you have to build routine and goals. I would recommend 100% to everyone when they are first housebound to write, even if it is just for you, write daily, get those feelings written down and out of your head. Argue with yourself, reprimand yourself, praise yourself, do all the things others used to do for you, you are now the only person who will do any of these things. Friends and family won’t, not at this point, they all want to smother you with kindness, to try and support you and without meaning to, pity you. The first months within your walls are hard and it is you that will make them hard, because you are fighting it, trying to over compensate. You will get there eventually, you will find your way through as no one can do it for you. I have given the steps that worked for me, but they won’t be exactly the same for anyone else, but prepare as much as you can in advance, would be my greatest recommendation. No where money will come from, who is there outside of your family to help you, work out if you can what you will fill you days with, be ready to grieve and be ready to live a new life, as a new person.