happy new year

Happy New Year!

January 2, 2018 by Anne Sweet 8 Comments

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?

My Sunday Photo – January 1st 2017

January 1, 2017 by Anne Sweet 4 Comments

Yesterday morning I woke up and it was so foggy. I grabbed my phone and took this photo of the trees at the bottom of the garden.

They look how my brain feels right now.
I hope that maybe in 2017 the fog will clear a little but at the moment it’s all consuming.

Today it is raining and the fog is gone..from the trees at least.
Today is my 1st anniversary of getting Transverse Myelitis.

Goodbye 2015 and Happy New Year!

December 29, 2015 by Anne Sweet 1 Comment

A usual I like to do a post reflecting on the year that’s about to pass and think about the future. It’s pretty self indulgent, but it’s something I’ve done for a long time and it’s quite a therapeutic exercise.

First of all I can say that this year has been much better than last year. We had such an awful time in 2014 with Star’s neck and numerous operations, and of course the dreaded halo that she had to wear twice. This year has been relatively tame in comparison.

The beginning of the year was the first time we had all three children at school. The Little Man had started reception the previous September and Star had returned to school full time after her recovery. It was strange not having a child in the house all day, but I coped.

In February we celebrated the Other Halves birthday by seeing his favourite group Ocean Colour Scene play live which was really good.

In March I grieved for the loss of my favourite author of many years, Sir Terry Pratchett. He was taken far too soon by the embuggerance, as he called his dementia.

In April I went with my eldest daughter to see the Gadget Show Live at the NEC Birmingham. We had V.I.P. tickets which meant we not only enjoyed the exhibition but we got front row seats at the Live Show. We also went on stage to have a look at Jason Bradbury’s Back to the Future DeLorean before having a back stage tour, then meeting the cast of the t.v show for chats. It was a very exciting day.

The DeLorean at the Gadget Show

Also in April I went to Blog Camp Birmingham. This is a fantastic event put on by Tots100 and I try to go every year when they come to Birmingham. There is always something new to learn about blogging and it’s great to meet up with blogger chums too.

Skipping May, which wasn’t exactly boring, but not really exciting either and onto June where I found I out I had made it to the finals of the MAD blog awards. This was the second time I’d made the finals and I have no idea how, I guess someone must read my blog then? Also in June I did the Race For Life and raised some money for Cancer. I will be honest, I didn’t run, I’ve never really been a runner, but I walked the full 5k in exactly one hour! Not bad for an old bird!

The Race for Life

July was rather exciting, kicking off with a theatre trip to see Peter James’ Dead Simple. I really do love live theatre so I was thrilled to be able to review this show.
Then we had a really fun day at Hatton Farm starting with the kids testing out bouncy castles.We also had some fun at the adventure farm. Hatton really is one of our favourite places to visit.
Then just as the school summer holidays began we joined in with the Big Hoot in Birmingham, where we had to track down 98 fabulous owls. We didn’t manage to find them all but we found loads and had lots of fun.
Finally, at the end of July it was Boo’s 8th birthday and we had a cooking party for her and her friends where they made pizzas and knickerbocker glories.

Buttons, the Cadbury World Owl from the Big Hoot

In August I took a very excited Boo on a trip to London to meet the lovely Bee Berrie for a cookery class. We had loads of fun, and even more fun trying to carry all the cakes and cookies she had made on the tube and train home afterwords. This was the most exciting part of being a Happy Eggs Ambassador.

Boo and Bee Berrie at her cookery class

We also had several days out starting with a lovely meal and play at Brewer’s Fayre, some more owl hunting for the Big Hoot and trips to the park where we enjoyed some paddling in the stream.
August is also birthday time for Star who opted for a family trip to Pizza Hut and the Little Man who had a bouncy castle birthday party.

Bouncy Castle fun

In September we had our first tragedy when we lost one of our older cats Scribbles. She fell ill quite suddenly and after a few days at the animal hospital we had no choice but to say goodbye to her.
On a lighter note, September was also the time of the MAD Blog awards and I got to stay at the lush Royal Garden Hotel and enjoy a fabulous evening with some great people. I didn’t win, but I never expected to, it was an honour to be there.

In October we had our second tragedy when our other older cat Suzie fell ill. The vet said that there wasn’t anything they could do for her but I couldn’t let her go until I felt the time was right, so we took her home and had a few more precious days with her.

In November it was time to face something that I had been dreading all year, my birthday. It was not just any birthday though, this year was a milestone and I made it to 40, I mean 50, yes I’m 50, I just don’t know how on earth that happened, who stole all those years from me? Actually, it’s not as bad as I expected it to be.

Then on to December where we got to see Treasure Island at the Old Rep which was really good, I think me and OH enjoyed the show as much as the kids.
December also brings the Christmas celebrations and this year we had the Little Man’s nativity as well as the girls music celebration. We also enjoyed carol singing on the hill, a trip to the Christmas Market and the kids enjoyed their school Christmas parties. We had a lovely Christmas with just our little family and a visit from Santa.

Some things I’ve not blogged about this year;

Star’s health – Although her neck has improved greatly since her fixation she has had other ongoing issues including a trip to A&E with a sprained ankle. She already fractured one ankle without us knowing and then subluxed the other with took a long while to heal, in fact it still hurts now, months later. In March she had an official diagnosis of Elhers Danlos Syndrome, a connective tissue disorder, which we believed may help us when we sought help for her injuries, but it seems we have a way to go before doctors will listen. We have also been back to her psychologist who diagnosed her autism and she is arranging help for Star at school and for her transition into secondary school next year. Finally, we are getting a lot of help from the gastroenterology doctor with her stomach problems which she has had since birth but we’ve always been told that she would grow out of them. Well, she’s ten now, and she hasn’t grown out of them so they are helping at last.

My health – To celebrate reaching my half century I’ve had a couple of nasty health scares this year, one which ended up in me being blue lighted to A&E for the first time in my life. I don’t remember that being on my bucket list of things to do before I’m 50! Things seem to have settled down for now and I don’t have any real answers, but I’m getting the help I need.

At home – We have now been living in our house for over two years and after having to wait 12 months for the plaster to dry and the house to settle before decorating, we have finally managed to decorate the whole of the ground floor of the house as well as the girl’s bedroom.

My Wishes for Next Year;

I’m hoping that Star’s health doesn’t deteriorate. We are going to see a geneticist in February who may give us more indication of what we have to look forward to. I’m also hoping that she copes with secondary school, at the moment it’s my biggest fear and something constantly on my mind.

I’m also hoping that I can move my younger two children to another primary school. I’ve thought long and hard about this and I really don’t think there current school is the right place for them.

We are all really excited and looking forward to our holiday in June to Devon. We’ve not been away for a few years because of Star being so ill, so it’s going to be a real treat. It’s already booked and paid for and piggy bank of spending money is already growing, I want to make sure it’s a really special holiday. The Little Man can’t remember ever going on holiday before. He has been away but he was too young to remember.

I also help that my health doesn’t get any worse. I want to be able to enjoy life with my children as much as possible without worrying about my health.

Of course I’d like to wish for peace in the world and an end to all this violence and war, if only there was a simple answer.

A cure for cancer would be good too, I’ve seen far too many people inflicted with this dreadful disease, it’s time we got rid of it forever.

Now, I feel that my wishes have kind of escalated rather quickly, so I’ll leave it there and whatever happens I wish for a Happy New Year to all who read this.