You may have noticed a lack of blog yesterday, I apologise for it but I was having a bad day. You will know when I am having a terrible day when I don't blog and am quiet on my favourite Social Networking sites. I was feeling very sorry for myself because I was awake on Tuesday night from about 2am with intense nausea and severe leg pain. They were burning and tingling with such intensity BUT worse than that was the feeling of throbbing heaviness, like growing pains times a million. I just lay there in the darkness, silent tears running down my face.
I sat in my bathrobe for most of the morning yesterday with chest pains, leg pain, more nausea and of course exhaustion. I was feeling seriously fed up and sorry for myself. At times I feel like this horrible invisible illness is changing who I am as a person and that worries me.
The past three years have been the happiest of my life. I escaped an emotionally abusive marriage, met my soul mate in Phil and have had some wonderful times. I have watched Phil complete a marathon in New York City with his boss (who between them raised over £10,000 for the Children with Leukaemia charity), had amazing holidays (both with and without the kids) in places such as Tenerife, Majorca, Greece, and Florida. Phil and I have had many boozy nights in London, seen shows, been to concerts (how much do I love Daughtry?), had luxury spa breaks and pretty much I have had more fun and excitement than I had in the previous ten years before we met.
I have done things I never thought I would (Karaoke) and have rediscovered my "fun" Karen. I got into running, changed my body and got into the best shape that I have ever been in my life. Everything came together and it was awesome. Then this happened.
The symptoms started gradually (numbness in my face that would come and go) until last year around September when the numbness came, stayed and invited loads of friends to join it. I was talking to a neighbour who has ME (so she gets it) and I told her that at times I feel like I am slowly sinking into a dark place, losing the fun me.
I feel resentful towards physical symptoms that I have no control over and I feel angry towards the Doctors who are taking their sweet time to help me. I am disappointed towards family members and people who I thought were friends who haven't even bothered to reach out and offer ANY words of comfort since diagnosis. Someone said to me that maybe they don't know what to say. Rubbish! Sending a little message of "how are you feeling" or "sorry you are going through this" takes five minutes and means the world.
I like to think that I am the sort of person who cares. When a friend's sister died of breast cancer I filled her freezer up with ready cooked meals that she could just throw in to the oven. When another friend's son got sick I helped run a campaign to raise awareness (even if it was just to get people to send positive thoughts and prayers). When Phil's Dad was in hospital I spent all morning in the kitchen before we went to visit baking cupcakes just for him. I donate (as much as I can) on people's charity pages be it for "Race for Life", "Movember" or another charity.
A business client attempted a challenge that included running from London, swimming the channel and then cycling to Paris. I jumped on it, promoted his cause, got people to donate to his charity and went out to support him during the run. I always send messages of support to people who I know are struggling in some way. I believe that showing people that you care when they need you is what helps them to get through it. I am not telling you this in a "look how great I am way (although I am pretty fantastic ha ha!) but just in a way to show you that I do put my money where my mouth is. I believe that when people need you, you step up and do the right thing.
Since getting sick I have been so touched by some people and equally disappointed by others. Sadly the "others" are the ones I would have expected to be there but something like an invisible illness is a great weeding tool. Let's give those people the attention they deserves shall we? None!
I have had some unexpected people reach out to me and that has really touched my heart. There have been many and I can't possibly fit everyone into one blog (this is already turning into a novel) but I just wanted to share a couple of recent things that have really meant a lot to me.
Phil's good friend in Denver (who I have never even met) sent me a Facebook message to tell me that she is doing a MS charity cycle of 150 miles. She wrote that she signed up with me in mind and that I will be in her heart while she punishes herself through the ride. Like I say, I haven't even met this lovely woman and that really choked me up. I have had messages through Facebook from work friends of Phil, they have offered words of support, made me chuckle, shared my blog with others and just simply been supportive. Phil's "Aunt" Jill has sent numerous Facebook messages, offered advice (she has a family member with MS) and has been just lovely.
Then yesterday happened and it gave me a whole new feeling of "wow, there really ARE great people in this world". Like I said at the beginning I was having a TERRIBLE day until just after lunch when these beautiful flowers arrived. I opened the card to see that they were from the company that Phil works for. It said that they had heard I was going through a hard time and that they were thinking of me. I was absolutely speechless and I am not ashamed to admit that I shed a tear.
The company that Phil works for (Ink Publishing) is a large one. It has offices all over the world and the fact that they did this just meant so much to me (and of course Phil). Their Facebook page is called HappINKness and part of their bio says "Ink is a happy place to work. Be it in Atlanta, London, New York or Singapore. This is part of our culture and we want to share some of our happiness with the rest of the world." They really did share their happiness with me yesterday, it completely changed my awful day into a wonderful one. I am so grateful and it just goes to show that just one act of kindness, be it a bouquet of flowers or a simple message, phone call or card can make such a difference in someone's day.
Today is a better day, I slept OK and have a lot more of a positive attitude. I have a pounding headache and my eyeball feels like it is being squeezed out of it's socket. My legs are hurting and the floaters in my eyes are plenty but today I don't mine. I am OK with it. "So what?!" girl is back. It might have something to do with the fact that the room in which I am sitting is filled with the lovely scent of these flowers.
Thank you once again, everyone at INK. Thank you all for reading and supporting my blog. Thank you for your lovely comments (I do read them all, even when I don't have time to answer). Thank you and good luck Lauren on your bike challenge. There are so many people that have been great but this is starting to be in danger of turning into a bit of a thank-a-thon so I will stop now.
I just feel so blessed, I feel lucky some days to have this MonSter because without it I wouldn't experience these wonderful acts of kindness or have met such wonderful new friends. It has shown me where to focus my attentions, which people really care and just how rich my life is. Pay it forward Bleeps, just reach out to one person today and show them you care, you will never know how much it will mean to them.
So enough about me, how are YOU?
