Monday marked the 9th Anniversary of me falling sick, it was also the day the legend that is / was David Bowie died.
I marked my anniversary with this post on my own Facebook profile and on my The Myasthenia Kid Facebook page which links with my blog. (You can also find me on Instagram – RachelJillMorris).
“Today is the 9 year anniversary of me falling ill. To say I feel sad is an understatement. To say I have learnt to live with the changes that chronic illness has brought to my life would be a lie. However there have been good things that have come from this experience, I have greater empathy for others, I have a closer relationship with my husband and my family, I have better friends. There is good and bad in every situation it takes time to appreciate the good stuff.”
When I first fell sick, I found myself in a very dark place. As the months went by I found more and more of the life that I knew was slowly being stripped away from me. Nothing can prepare you for losing the life you loved and the things you took for granted. I am so thankful for the people who stood by me whilst I wallowed in self-pity. I must have become incredibly boring whilst I talked non stop about every new symptom and how yucky I was feeling.
The hardest thing to give up was walking my dogs, I was the one that walked the mutts, miles come rain or shine. The sense of freedom I got from those daily walks at the time was taken for granted. There are places that I loved to walk that I will never see again because they are an hour away by foot from the nearest car park. I wish I had taken photographs as over time I am losing the memories of them. The dog walking was given up which much reluctance by me, due to fainting / falling several times on walks. The common can be very isolated in places and without a decent mobile phone signal, if I had injured myself I could have spent hours waiting for help.
I’ve spent years being bounced between doctors and seen a side to medicine no one should see. After my first appointment with my new consultant in December last year I found out that I had been over the years diagnosed with CFS / M.E, Fibromyalgia and for a while Myasthenia Gravis, from which the blog takes its name. I have also been diagnosed with somatiform disorder, Bell’s Palsy, a movement disorder and many other things which have fallen by the wayside. If I had not fought so hard when I felt I had nothing left to give, when I felt at times death would be better, I would have never got to the diagnosis of PoTs (postural orthostatic tachycardia syndrome) and EDS (Ehlers Danlos Syndrome).
During the year that I insisted that I had both EDS and PoTS to my old gp, I was told PoTs doesn’t exist and EDS was too rare, if I had EDS I would have been diagnosed by now. I proved my hypermobility over and over again, showing the doctors the Beighton scale and performing my party tricks. Eventually I paid privately for a consultation with a Rheumatologist who confirmed the diagnosis within five minutes of meeting me. I thought the medical battles would be over, they weren’t I was just deluged with a whole bunch of different ones.
There are so many awful experiences I could recount, that I could write a book. Some have scared me psychologically and cause me to have anxiety attacks when faced with meeting new doctors or having to stay in hospital. I find it very hard to trust people, especially anyone in the medical profession. I have been badly hurt by those I thought were my friends and I would have done anything for.
I still carry a lot of anger but it’s no longer rage, where I would do anything to get my revenge on the people who have hurt me. There are still situations where the anger bubbles to the surface and it takes me by surprise. Over the years I have been trying to let things go, I can’t change what happened to me in the past and I can only look to the future. It has taken years for me to get to that position, for quite a few years my anger consumed me and coloured my outlook on life. All it did was make me very unhappy. Over time the anger lost its strength, I had become so far removed from the situation and the people who hurt me, that the only person still caught up in those events was me. I don’t know when I made the decision to just let it all go, I don’t think I did it just happened.
If you had told me 9 years ago that there would be positives that would come out of this situation I would have probably slapped your face. Yet as much as there have been bad things happen there has also been a great deal of good. My understanding of living with a chronic condition has deepened purely from my own experience and this has given me a whole new level of empathy. I have always been quite an empathetic person but now I can apply it to everyone I come into contact with. I know that everyone be they sick or not has stuff going on in their lives which is hard / stressful / emotional and understand that their initial reactions may not be their true feelings. In a nutshell I cut people a little more slack than I used to.
I always thought I had a good relationship with my sister. We may have fought like cat and dog growing up but I thought we got on overall. For a while I think we lost each other or rather lost our understanding of each other as our lives were so very different. She had become very sick at a young age, I was “healthy” and had moved out of home. We didn’t seem to have a lot in common anymore. When I became sick she was one of the first people I spoke to at great length about things. I knew she understood what I was talking about because she had already been through the emotions I had and she knew eventually I would reach a level of acceptance. Our lives are very different again now, she is married and a mother to two beautiful boys, I am child free by choice and keeping in contact can be difficult due to the demands of motherhood. We always make the effort though, through text messages or phone calls. Of course we still argue, it would be weird if we didn’t.
I lost a lot of friends when I got sick, I could go weeks and sometimes months without seeing anyone. I have also lost friends since becoming ill, one got bored with me never getting better and didn’t understand that there was no getting better. Another was just a master manipulator, who unfortunately I let get inside my head. Eventually after 12 months of pleading by my family and my closest friend, I decided to call time on the friendship. It didn’t go down well and I was sent a stream of abusive text messages. However I had come to the point where I would rather be alone than have this person in my house. When you feel that strongly about a person, even when it means social isolation you have to get the hell out of there. That was another lesson I learnt and a good one, that friendships have to be equal, just because someone comes to visit you, doesn’t mean you don’t have a voice or that you are their subordinate. I spent years being made to feel grateful that this person spent time with me, never again will I let that happen.
I have made new friends during this time and I have to say better friends. They may not understand my illness, there are times I swear that I don’t but they are understanding when I need to cancel at the last-minute or have to show them the door because I am exhausted. They know to keep their visits to 2 hours maximum, even if I look like I am ok and I am yapping away. They know that more than that will exhaust me. Some friends stay longer and that is ok because when they visit I ensure my week after they’ve been is completely free, to allow for recovery time.
Its taken me a while to be able to break down the walls that I have built around myself for protection. When you have been hurt so badly by others you tend to cut yourself off. I have taken huge leaps of faith and allowed people into my life. Occasionally I will catch myself putting my defences up, it’s a work in progress. My friends now actually want to spend time with me because they enjoy my company. I am not being used for their gain, as people I thought were friends in the past have. I hate to admit I have been sucked in by those kinds of people but I know so many people who are chronically sick and they’ve all said it was the way they were treated by people they thought were their friends that hurt them the most.
Another positive to come from being chronically sick is I get to spend all day every day with my babies. Dogs lives are so short, I feel it’s an honour to be with them everyday. I may not be able to walk them anymore but I get enormous comfort from them. They know when I am sick and are ultra protective of me. They love me unconditionally, even when I am a grouch because I feel like death warmed up. They may not be able to run and get me hot water bottles and the like but when I am home alone they give me a sense of security. I can’t explain how much I love them.
I also get to spend more time with my husband, we are no longer ships that pass in the night due to our work schedules. I get to spend quality time with him. Our relationship has deepened and grown stronger since I got sick. I have seen a whole new side of him that I never knew existed. Even colleagues have told me he is much more compassionate and thoughtful since I became ill. I knew it was there under the surface but it has really come to the fore. He has grown as a person to have become so much more than I could have expected him to be. I am so proud of him. Many men (and research studies back this up) would have walked away when being confronted with their wife getting sick and no longer being able to work. Jay stepped up and has shown his love for me in the face of some pretty awful circumstances. He made the choice to stay, be my protector and my caregiver.
Just when I was in the depths of despair in 2008 I began my blog, when I started it I thought I was dying. I am not being melodramatic, I knew that there was something seriously wrong with me and none of the doctors I saw were taking me seriously. It was started as a record of the treatment I was receiving at the hands of the medical profession. It was an outlet and a safe place for me to vent my feelings, to say the things I couldn’t in real life. I found blogging therapeutic, I found my voice again. I may not have hundreds of thousands of views or have gone viral. I am actually quite thankful for that at times. I have a loyal band of readers every week and that’s enough.
There have been times that I have stepped away from blogging due to feeling that I didn’t have anything worthwhile to say, this was always caused by depression. A demon I have been fighting for many years. There were also times that I have just been too sick. At the moment blogging is such a huge part of my life that I can’t imagine not doing it. It has become a large part our mine and my husband’s life, so much so every week he asks me if I have a piece ready for Thursday. A question I never thought I would hear him ask and even though he is not a great reader he has surprised me several times by telling me he loves the piece I have just published.
These are just a few of the examples of the good things that have happened since I became chronically ill. It has taken me 9 years to appreciate the good that has come from an awful situation. What happened to me between 2007-2009 would have sent many people into a nervous breakdown, as an individual and a couple we felt we were being attacked on all sides. There seemed no light at the end of the tunnel. Slowly we both became accustomed to the ways our lives had changed. When chronic illness strikes it would be foolish to believe it only affects the person who has become sick. It affects everyone around them, it changes relationships and friendships. It’s only now I realise that, nine years down the line. Thanks for hanging on in there.