One of the things that goes hand in hand with living with most chronic illnesses is they are totally unpredictable, one day or even hour can be totally different from the last. This one annoying fact I think is responsible for our lose of friends early on in our illness, before all the other reasons they disappear come into play. I can remember quite clearly how after not showing up for a couple of leaving do’s for work, that the invites from those around the company, other than my closest of work friends quickly dried up, people just stopped asking me. I’m sure they like me were fed-up of hearing the “well I can’t say, but if I can, I will” line, followed by no sign of me at all, other than a message sent to say sorry. It is so hard for those who don’t know anyone who is ill, to get their heads round just how up and down our lives are, or how impossible it is for us to say even a couple of hours earlier if we will be able to come back out for the evening. I am sure that all of us who are ill have equally felt guilty about letting people down, or having to miss another night out, just because we are ill, doesn’t mean that we don’t still want to be part of the world. For me saying no to a party, hasn’t been an issue for a long time, these days it is more a case of doing the things that need to be done, without loosing the energy to complete it, before I even start. All those early issues seemed so huge that I honestly thought that I was having a really tough time, I couldn’t see then just how mild and how tiny they really were, to me I had every symptom and surly that was as bad as they would ever get, being naïve is something I have always done with great skill and style.
Like most people these days as soon as I had my diagnosis, I was on line reading everything that I could, 13 years ago, there wasn’t a huge amount out there, these days, well type any illness into Google and pages appear one after another, filling the screen with a bewildering choice of view points. When I first looked there were a few medical sites, but mainly the info came from amateurs, like me, but to my disappointment now as then, is too many of them put their information in a medical format, which is something that totally fails to tell the true story. So it wasn’t surprising that I could sit and tick off every symptom and come to the conclusion that I had the lot, but as I said a couple of days ago, every symptom changes, even pins and needles are now nothing like I had had ever before in my life, yes a symptom, but intensity changes everything. I am totally sure that right this second there is someone somewhere in the world sitting post diagnosis of what ever, ticking their way down a list, without the slightest understanding of what their future really holds. I for one, would have loved to have come across something like my blog, that told me everything without holding back, well I wouldn’t be writing it if I had, but I am equally sure that there are some who might find life easier at that stage not knowing, for some naïvety is a blessing.
It wasn’t long after I started on twitter that I ran head long into a person who had set herself up as the person with all the answers for those with MS. A question had appeared to which I gave my blunt to the point answer, you would have thought that I had answered telling the person to go and commit suicide, when all I had said was simple to the point truth. She went for me, sending tweet, after tweet and me being me, I answered every one. I was trying through out to calm her down and to make my point, an hour later, she became the first person I had ever blocked. Which of us was right was never established, should it be her 110% sugar coated pill, with a cuddle attached but not answering the question, or my to the point, sorry, this is the way it is, but don’t let anyone push you around approach. The person who asked the question still follows me, I have never asked if she still follows the other person as well, it’s not my business, nor have I asked her which advise she felt helped her the most, as the poor girl felt so bad about the whole thing. I guess the truth is we all go out there and stick our finger into each pie, until we find the one that we like best and that is where we take most of our information from, keeping the others around, just in case we don’t get the answer we want from our main sources.
Is there ever a right or wrong way of answering or passing on information about something so personal as health, well probably not, what there are millions of options on, is the type of person who is asking the question and what they need at that second. From the very first email that was sent, the fact that people can’t see each other and read into things, things that simply weren’t what the writer intended was clear. Sometime writing is a scary responsibility, what I say daily could be read by anyone, I don’t know their mental state, what illness they have or if they have the slightest understanding of who I am as a person. I have often feared that something I might say, might just lead someone to accidentally or otherwise, do some harm to themselves, especially when I talk about what I have done and survived, without realising it could be dangerous. I know that I repeatedly say, “I am not a doctor”, but all to often I know people also say when giving advice to others “I read it somewhere” as though everything we read is nothing but fact, advice is probably the most dangerous thing we ever give, but I am going to give some…….. Naïvety is a blessing only to those who are scared of, or aren’t capable of, understand the truth.
If you are recently diagnosed with any condition, find out as much as you can about it, at every stage, not just from doctors or medical sites, but from as many different sources you can. Read about it, talk about it and arm yourself with all the knowledge your brain can hold, even if like me you might forget most later. The more aware we are of what lies ahead, the better we will be at dealing with the now and making our futures as comfortable and manageable as possible and I’m not just talking pensions.
Those who read my blog regularly know all to well that I am still working my way through the whole process, still trying to work out what is happening, what is right, wrong or something else. All I can ever do is write about what is the now and what was the past, the future is still waiting to be discovered, I wish I wasn’t so naïve about that, but I still can’t find out the facts about any of it, we are learning them together. Today I am tired, in pain and wishing I didn’t have the shopping arriving in the next hour. I am also wishing that my diaphragm would let me take a full breath and that my guts would stop hurting and that I hadn’t watched “Holby City” last night, great show, just a little to graphic when your guts aren’t working and they happily removed someone’s as thought it was nothing.
Please read my blog from 2 years ago today – 26/11/12 – Dealing with business
Two Rooms Plus Utilities 