This is a subject that some find very hard to speak about but it is also a very important part of having a chronic illness.
I went from a healthy person to a chronically ill person overnight and that brought many trials and challenges with it.
You go through the same process of grief that you have if you lose someone close to you as you lose the person who you were and you are replaced with a body that you don’t even recognise.
Never in my life did I think that I would be disabled by an invisible illness that more than likely will stay with me for life by the time I reached 40 years of age – that was not in my life plan!
At the beginning you start with disbelief that this is truly happening to you, it can’t become that bad can it? This won’t be forever surely? There must be something that I can do to change all of this?
Once I received my diagnosis very quickly I started to feel like I was falling through quicksand, my future was being mapped out for me and I had no control whatsoever. My illness defined the way my days were carried out and I was stuck in this body which was beating me up from the inside out.
All of a sudden all of your hopes and dreams fly out the window and you find yourself thrown into the depths of grief and you mourn for the life you once had. You look around you and see friends/family carrying on with their lives and wonder why this is happening to you? I felt like I was standing still while everyone else moved. I can only be completely honest at this point because if I am not then this blog just isn’t worth reading. I felt angry and hurt by friends and family. They still had their lives, they still had their dreams. Often on social media I could see them all happy, smiling, out with friends yet here was I, stuck, in pain and feeling as if the world wasn’t listening to me. I lost my hope, I lost who I was and who I was meant to be turning into in my life. There is no cure for my illness and I watched as the life I wanted crumbled in front of my eyes.
Wow was I angry! Angry that I now had an incurable illness and that my life was changing drastically but yet to add insult to injury so to speak I could do absolutely nothing to stop it. I had to simply sit and watch as my body and mind changed. Often I looked at myself, blaming myself for having this illness. What had I done? How did I cause this to happen? Of course, I didn’t do anything, I didn’t cause it but at that time I was not listening to any rational thoughts. The anger took over and I just had to go through that.
I have suffered with depression a lot in my life but this hit at another level. The thoughts I had, and if I am still honest still have from time to time, were extremely dark. I wanted to shout and scream about how unfair this all was. I don’t want this kind of life and so what was my options? I didn’t really have any other than to end it all. These thoughts are so common with people with chronic illness because we just cannot see a way out. The doctors are clueless, friends/family try to understand but in the end we are alone in our pain, we deal with this 24/7 and sometimes the days come where we just cannot deal with it anymore. It is reported that people with ME are likely to commit suicide six times more than the average person. In the beginning of my illness I couldn’t understand that but as time has gone on I can relate to it totally. Whoahh there…no one panic, I do not have any knives handy nearby, I am merely saying I can understand it, I don’t say I want to do it but I have felt that feeling of just not being able to cope with all the pain and all the changes that this “new life” brings.
It changes everything and everyone around you. You are hit by isolation where the illness robs you of being independent like you used to be. No longer can I make plans on a daily basis. I cannot leave the house on my own and take a nice brisk walk or get in my car and drive wherever I wanted. Popping to the shops is a thing I used to do but no longer can. How I long for the days when I used to walk around a town centre with bags of shopping in my hands, grabbing the occasional coffee (and cake!) and just taking that day as it comes. Now I have to rely on others and that really doesn’t sit well with me. I would give anyone the shirt on my back but asking for help is something that I find extremely difficult. If someone offers help I will take it, often very reluctantly, but that sits better in my head. To ask someone to actually help me is something that I am sure I will always find hard to do. I am simply not used to it, no matter how much pain I am in, how I may need a pint of milk from the shop, I just find it hard to accept help. I am stubborn by nature but most of all I feel like it is the part of me that is still holding on to that old life of mine where I did what I wanted, when I wanted – obviously within reason!
I have got better at accepting that this is now my life – I am not fully there by any means but I can accept it to a point. I don’t like it but I have to see that this is how it is and no amount of upset or heartache is going to change that. The more upset I am, the more my symptoms flare so in the end the only person I am hurting is me.
I got to the point of realising that yes my friends/family were still out and about living their lives, enjoying socialising etc and why shouldn’t they?! My illness is not their fault. They cannot just sit still so that it makes me feel better. The one thing that I do find hard though comes with the feeling that you are forgotten about. Hey, life is hectic, I know that but sometimes when you are not feeling your best self and the pain is high you can feel like you are no longer thought about. An event is being held, an evening being planned but you no longer are invited. Friends/family think that well, she wouldn’t be able to go anyway because of her illness. All I will say on this is if you do have someone with a chronic illness then still invite them…please. Yes, you are right, they more than likely wont be able to make it and will possibly even cancel going on the day but to be invited means you are being thought of. Being thought of in this lonely isolated world of ME means more than you can ever imagine. Be understanding, they are not making any of this up and it really hurts them when they cannot make an event of gathering. Believe me, I have first hand experience of this. It destroys you but worst of all is the questioning doubt in your head that people don’t really believe you. They think you just simply cannot be bothered to go out but please believe me, that is far from the truth. We would give anything to be able to do all these things again but part of the acceptance of the illness is accepting we just cant. Of course people can look at you one day and you are smiling, your hair is done, your clothes look nice and they think, “well hang on, it can’t be that bad, she can’t be in that much pain” but what you see is not what is going on inside. You do not know how long it took that person to get to the smiling person you see in front of you. You will also not see the person broken after the event for days, even weeks on end, struggling to even get out of bed and writhing about in agonising pain. Unfortunately some people are too quick to judge but I had to learn very quickly that those people are irrelevant to me. Those people who cannot see through my smiles are simply not worth having in my life.
You get to the point of acceptance. You are not dying – although believe me some days I swear my body is! You are a fighter, a warrior and you will live to see another day. I took a long time to get to this point and even though at times I wobble – I am only human after all – I have to accept this is my life. It is what it is. Some days I can cope, some days I cant. Some days I can leave the house. Some days I can’t even get out of bed. It is a rollercoaster that takes you through many twists and turns as every day is never the same BUT it has forced me to stop – to stop and look at the world. I now have all the time in the world to notice things, to look at things that I never noticed before because life is such a fast pace. I have lost a lot of things to this illness but I have also gained a lot of things too. I have met online so many other people battling with ME and similar chronic illnesses and they help me up when I have days where I simply cannot carry on.
I don’t want or need your pity, I just want your understanding. For someone to simply be there, let me cry, let me rant, rave or just cheer me up. Tell me about your life because mine is in this bubble and not a lot really happens so take my mind off of it for a while. I have been told in the past by friends they didn’t want to bother me with their troubles when I am going through all of this but seriously…please bother me. Please tell me because it takes my mind off of what I am going through. I no longer can actively do a lot for others anymore but I still have a big set of shoulders that I offer to people to lean on (not physically lean on mind, that will hurt me!). I can listen, I can give advice and that helps me carry on with a smile, knowing I have helped someone.
I cannot apologise for anything in this particular blog that you may find hard to read. I have to tell the truth and I have to be honest. This is my life after all!
Faith, Trust and Pixie Dust xx