Happy New Year to all my readers!
I know I’m a little late but we had an awful Christmas and New Year’s Eve, so last night we had our traditional munchies, film and family time and it was much more relaxed and finally we can celebrate the New Year.
Although it was a really tough week I’m happy to report that the kids had a great time. Their little face on Christmas day where all I needed to make Christmas special. There is nothing like that feeling and I will miss it when my young ones grow up.
So, with Christmas over it’s time to start thinking of the New Year and what it will bring. Yesterday marked my second anniversary of being ill. Next week is the one year anniversary of my actual diagnosis, Stiff Person Syndrome with Progressive Encephamyelitis with Rigidity and Myoclonus.
Next week I go into hospital for the third round of IVIG (Intravenous Immunoglobulin.) The last time it left me with the most horrid migraines that I thought I was dying. Seriously, I’ve been a migraine sufferer for over 30 years and I’d never experienced anything like it. It was also a hemiplegic migraine which meant I also suffered paralysis and my poor hubby thought I was having a stroke and took me straight to A&E. Next week I am going to be more prepared, plenty of water (at least 3 ltrs a day) and regular pain relief. I am staying positive. The first time I had IVIG I thought it was going to be my miracle treatment and when it didn’t work I plunged into depression. The second time, after the awful migraines had stopped, I did see some improvement. It wasn’t the miracle I seek, but a little relief from some of my symptoms was well received. Unfortunately they didn’t last. I can see myself getting worse all the time and this scares me so much. The life expectancy for someone with my condition is 3 years and I am now into my third year! The good news is that the condition is incredibly rare so it’s difficult to go by the original life expectancy because most of the deaths were in the early days before they had worked out any kind of treatment. Also, most of them had other conditions as well, cancer, diabetes and epilepsy. I don’t have any underlying condition that is life threatening.
Next week I am hoping for less side effects and more positive results, those who have IVIG regularly tell me that it works better each time (but it also stops working after time.) I have to stay positive!
I’ll be honest with you, my positivity has not been around for the past week or so. I wanted to take a break from my blog and social media because I felt that being negative was not the impression I like to give. I like to show my positivity, I’m faced with so much trauma every day but I find sharing positive blog posts and messages helps to keep me focused. However, when you are feeling low and close to wishing this life would end right now, it’s so hard to express exactly how you feel without it looking like you are seeking sympathy, or even worse, trying to make others feel bad.
Sometimes, though, you have to be honest, and honestly I’ve been feeling CRAP. Everyone around me, apart from my little ones, has made me feel sad and low. My illness has been awful, I have felt so so ill, and all the time all I’ve wanted to do is enjoy the holiday and feel the Christmas spirit. And my family has just made me feel worse. I’ve put up with so much sh*t in the past week, too much. If it wasn’t for my little ones I think I would have just given up on everything.
But, my little ones have been my joy in the madness. They have been so happy and carefree. I may have been frustrated with them a couple of times but it was nothing that I’m not used to. Also, my little Star became a young lady over the holiday. She’s really growing up now. I know she is behind in maturity, but some things you can’t delay, and a 5ft 5 inches you cannot think of her as a little child anymore.
So, today is a new day and despite the fact that my arm has gone into an incredibly painful spasm that has now lasted more than 12 hours, I am going to keep plodding on and dig deep because my positivity is in there somewhere. I cannot allow myself to go into this year feeling so low.
I have much to look forward to this year. I am staying hopeful that next weeks treatment will be a good one. Then in April I am going on a fabulous Blogger Retreat which I’m really looking forward too. In August we are having our first 7 day holiday in many years (We usually just have a short 4 day break) the kids are going to be so excited. There are places I want to go, things I want to see, memories I so want to create. If this is going to be my last year it’s going to be great! But of course, it’s not going to be my last year, I’m not ready for this stupid condition to beat me yet. I’m ready for a fight!
It doesn’t matter how many times I fall, I will always pick myself up and carry on. When I did the Activation Game I exercised being the best possible version of me for a day. It’s always a great thing to strive for, being a better version of yourself, and something that I often try to practice.
How about you?
Happy New Year
Happy new year! Wishing you all the best for 2018!
Good luck at the hospital….It sounds like you are well prepared this time.
It sounds like you have some great plans for the year…The bloggers retreat and holiday sound like just what you need x
Children so often help to take the rubbish away don't they? I am so sorry that you feel so crap at the moment – I really empathise as not so good myself with a flare in POTS symptoms and dislocations PLUS now got hubby's cough/cold on top of it. My ears are so bad that I can't stand up….hubby has gone on delayed Xmas visit to his parents, leaving me to the mercy of the teens/young adults of the house. I might try to run away..if my wheels will take me! Anyway I hope that all goes well with next leg of treatment for you, and I so admire your positive vibes…..will def try to be better version Happy New Year #MMLinky xxx
I am so sorry you are feeling bad but also pleased your family bring comfort and you have firm plans for the New Year. My brother was diagnosed with this condition years ago. He is now fine most of the time and making a huge move to Greece this year. I am not sure what led to his recovery as I remember he was told it would not get better at the time and it was a long fight back.
Popping by from #BlogCrush
Hi Anne, I want to give you a big, fat hug and that's coming from a person who doesn't really hug. Reading your post made me feel sad, don't take that the wrong way, I think it's good for you to share honestly how you feel. Posts like this make me stop and realise just how lucky I am…I really hope that your treatment gives you relief once any side effects have worn off… As for being the best person I can be, I do try, but the time of the month can seriously encroach on my good intentions sometimes, but hey, I'm only human!… It is sad when our little people grow up, I've been the smallest person in our house for a long time now and my youngest turns 18 next week, sometimes I battle to see the children they once were and at other times it shines through.
I hope you have a better week and life gives you a break.
Happy new year! Good luck with the next round of treatment, I hope the migraines can be managed this time. I hope 2018 is kind to you x Thanks for linking up with #TheMMLinky
Happy New Year! You have some lovely occasions to look forward too, I hope when they arrive that you’re in less pain and that the treatments help x
Gosh you’re so inspiring. Really hope your treatment goes well and it sounds like You have lots of great things lined up for the year ahead, I really hope it’s a good one for you xx #blogcrush