One of the first things you learn about chronic illness is, no matter how rotten you feel, life has to go on. It’s a hard lesson and not one that ever get’s easier to live with, in fact, it actually gets harder. For me, I’m not sure if the way I learned that lesson was harder or easier than it is or was for others, no one believed me that I was ill and with my husband constantly not there, either because he was at sea or studying for his next step in the Navy, alone was where I always seemed to be. We lived all over the country, moving every few years but always hundreds of miles away from my or his family, not that that was a bad thing, as none of them believed me either, but with two small children to care for, well their belief was clear, I was Mum and I was on duty 24/7. Being ill with what they think now was RRMS back then, meant that life was tough and I didn’t feel like I was able for much of it, to really be the person I needed to be, but I had no choice about who I had to be and what I had to do, I just had to get on with life. I expect that if you were to sit down a 100 people with chronic illness, that most of them would agree that at first when you don’t understand what is really happening, that it is hard and you push yourself to keep up with everything as there was no clear sign you were really ill. It’s not like getting the measles, then you have a nice red rash and a fever, most of us just have a collection of symptoms that don’t make any sense, so you push on with life and living. To be fair, it was a good lesson to learn as it meant that I pushed on and lived my life to the full, in some ways not being believed worked in my favour as I doubt I would have done many of the things I did, if the truth had been found back in 1982. The only problem with living that long to a plan that was worked out that long ago when I actually had what is really a different condition in many ways is now starting to cause me problems.
Since my MS changed to PRMS and my health had deteriorated, keeping myself going is getting harder and harder. I have taken so many of the steps needed to stay as well as possible totally unguided or helped by others, just by working through it myself and setting my own standards and expectations all along the way. Each milestone had pushed me just that bit further away from living an average life and finding myself housebound 8 years ago felt as though not much more could really happen to me. With hindsight, I can see clearly that my health has still been slowly working its way downwards since then, but in many ways, I didn’t feel it happening. Yes, the COPD diagnosis and the 2 year battle with my bowels, which by the way are still not working, was a kick in the teeth, but other than that I thought I was doing really well and staying more or less level. Hindsight tells me clearly that the person sat here now, is a shadow of the person who was sat here 8years ago. This isn’t just because things are bad just now, no this started 8years ago, when I put a wall around myself and told the world that I was going to survive and things just wouldn’t get worse, but they have, I was just doing what I always do, bravado over where I was and defiance of the future, I’ve become an expert at both. 8 years ago I wasn’t filling myself with Morphine every day or sleeping for 12 to 13 hours out of every 24, I wasn’t unable to remember when to take my pills or to take a shower, I didn’t need to have anyone do anything for me, I was still a whole person with a whole life.
Being housebound changes you more than you realise, it is like everything else in life that happens to you, it is so gradual that you don’t see or feel it, but we all change just a little every day. Add in a medical condition that is eating you alive and restricting everything from your body to your mind and it is clear to anyone that I have changed a lot in those few years. The last few days of feeling hellish have made me admit to myself that this has been building for quite a while, which means it isn’t a flare, flares by their very names appear suddenly with dramatic effects, from their mildest of being so ill you can’t move to their extremes such as not being able to coordinate your breathing, speech and swallowing, or a limb suddenly stopping working, this isn’t a flare. Nor is it what I keep saying it is, one of my sleepy phases, this is far deeper than just fatigue, yesterday’s disastrous shower told me that. My breathing is difficult, not because of my lungs but because of my diaphragm and my intercostal muscles, both conspiring to make deep breaths painful, They are no longer just painful to the front half of me, they now plague me all around my body, putting more and more pressure on my internal origins. I feel as though I am wearing some kind of odd corset as somehow it is sat behind my breasts as the pressure isn’t felt in them at all, although the pain I have to their sides and into my armpits is almost as permanent as my guts being tied in knots. Right now, if I could exchange my upper body with one that worked, I would be most grateful. Nothing I am feeling today or yesterday is new, every single pain, pressure or effect, is one that I have already been living with for months, just all together and all worse, this is not a flare, this is progression, the same progression that has slowly been happening for the past 14 years, that we know of.
I know there is no rhyme nor reason as to what is happening right now, this is PRMS, what do I expect, a 10-page form in triplicate asking permission, it does whatever it wants whenever it wants and I should know that by now. Yes, there has to be a reason why so many things are suddenly going nuts at the same time, and that reason can be as simple as bad luck. 8years of being housebound has taught me a lot, but it seems I had forgotten the first rule of PRMS, adapt as fast as you can or you will be run over. It appears that the future is closing in on me, I can only hope that this is just a glimpse of what is to come and like all phases it will settle, but as I enter my 6th day in which I feel worse than the one before, well all I can do is hope and push gently to do what I can today, just as I normally do every other day. You can’t ignore PRMS, but you can do a very good impression of it if you just try.
Please read my blog from 2 years ago today – 4/03/13 – A search for dignity
Over the weekend, my arms haven’t been too bad, a lot of tingles and some mild spasms but I managed not to drop anything or to loose control over them. I was reminded on Saturday night of a sensation I have never written about nor has anyone asked me about it, but I am as sure about this……….
MY DEAR, PAMELA.PLEASE, PLEASE REACH OUT TO ADAM OR ANYONE. YOU HAVE NOTHING TO PROVE. YOU ARE STRONG, EXCEPTIONALLY INTELLIGENT,A VERBAL ANGEL FOR US WHO SUFFER TOO.DON’T DO IT ALONE.TEAR DOWN THE WALLS. WHAT I WOULDN’T GIVE FOR SOMEONE IN MY HOME TO JUST HOLD MY HAND AND SAY”I’M HERE FOR YOU”.YOU HAVE THAT, TAKE IT. NOW AND IN THE FUTURE IS WHEN YOU NEED TO STOP JUST GIVING, BUT TAKING( IF ONLY A GENTLE HAND TO HOLD).YOU HAVE THAT .I PERSONALLY DON’T HAVE EVEN A GP, WHO WILL HELP.YOU DESERVE A LITTLE HELP. WE ALL DO……………WITH LOVE YOUR FRIEND NEVI.I’LL STOP CRYING.. SOON