Happy Birthday Big Brother!

It was my big brother’s birthday on Friday and we all went out for a meal. It’s always good catching up with family, we all had a great time.

My brother was already a teenager when I was born, in fact I had two teenage brothers who were both married by the time I was seven. I also had a younger brother, so I was one of four with a big age gap.

My eldest brother had two children with his first wife, a boy and a girl. They were both teenagers before he had his third child with his second wife.. He went on to have another little girl.

I had two children with my first husband, a boy and a girl. They were both teenagers before I had my third child with my second husband, a little girl. I then had another girl and finally a boy.

Do you see the pattern?

If I’d stopped at the two girls I’d have exactly the same pattern of children as my brother, and only a slightly different pattern to our Mother.

Back to the Birthday Bash, as you can see, the kids had fun too!

Oh Dear! I just remembered that last week I promised a photo of our new family member! Well, okay, I don’t want to disappoint. Say hello to Ash, our new kitten. when he grows up he wants to be a tiger!

Photalife

 

Sunday Snap

 

My word of the week has to be kitten.

We adopted Ash on Monday and he’s been a big hit for such a tiny little kitten. At just over six weeks old he is small enough to fit in the palms of my hands. But his paws are big, so I don’t think he’ll be small for long. We may have a little tiger on our hands.

He was the only boy in the litter with four sisters. We were looking for a male cat so he was the obvious choice despite his sisters also being incredibly cute.

He’s a bit shy and at the moment and he’s living in my bedroom. It’s the safest place for him for now but he’s certainly making himself at home. He loves the cat condo we bought him even though it took a while to get him to come out of a cardboard box. The first night he climbed up onto the bed and slept with me. I’m not one that normally allows pets on the bed but he’s still a baby so I let him off. I think my snoring comforted him haha.

We have always had cats and for 16 years we have had more than one cat at a time. We lost three cats over the past three years and our one remaining cat, Sabrina, was feeling a bit lonely. Fingers crossed that she gets on with our new addition once we are ready to introduce them. I think she already has a hint that there is another cat in the house. I’ve found her sniffing around outside my bedroom. We also fuss her after being in with Ash so the scent of each cat is shared.

The kids adore him and love playing with him. He’s getting used to us all already, although we try not to crowd him by going in one or two at a time.  He’s a bit awkward to get photos of because he doesn’t like it when we get our phones out, it must be pretty scary for him. I’m sure as time goes by we’ll end up with hundreds of pics of him though.

 

The Reading Residence

 

 

 

In the Beginning

Two and a half years and a couple of weeks ago I woke up with pins and needles and ended up in hospital paralysed. It seemingly came from nowhere, but I now believe I did have hints that something was happening with my body.

After two weeks in hospital I came home with a zimmer frame and the promise that after six weeks physio therapy I would be fine. Nine months later when I saw my consultant next I turned up in a wheelchair, things were not fine.

I’d had an MRI in hospital which hadn’t told them much about what was wrong with me, so my consultant did blood tests, muscle tests and nerve tests and I ended up with a diagnosis of Stiff Person Syndrome, or a specific type of SPS known as Progressive Encephemyelitis with Rigidity and Myoclonus, or PERM.

So for the first year I was expecting to get well, but exactly a year after my hospital admission I found out that not only was I not going to recover, but my illness was progressive.

Year Two

I am still in  a wheelchair although I can walk for short periods with aids. I walk around my home but I always have something to hold on to. I don’t walk outside very often, I’ve tried sticks, a rollator (walker with wheels) and crutches. They all help with balance but nothing can stop the pain and fatigue. I get so far and my body just doesn’t want to move any further.

I take a cocktail of drugs every day, but the pain is always there, I may be able to dull it, but it never goes away. Sometimes my body freezes up into a complete spasm. Sometimes I can’t swallow properly, sometimes I can’t breath properly, it’s relenting.

Apart from the drugs I’ve had intravenous steroids which helped in the first instance, but did little to help after the second round. I have regular doses of Intravenous Immunoglobulins (IVIG) but it doesn’t help much. I get reduced spasms and it helps the myoclonus (jerking) but it’s not a miracle cure as I’d first hoped it would be.

Parts of my body are always stiff, parts are always in pain, parts always have pins and needles or neurological pain. It affects my sleep, it affect my life, each and every day.

I also have startle reflex, so a loud noise or something to make me jump, or even an intense emotion can make me go stiff, if I’m standing I may fall, if I’m sitting or lying, it just hurts.

I also have vertigo which can come at any time and last anything from minute to hours. This makes me feel like I’ve just downed a bottle of vodka, but not in a good way. Double vision, dizziness, loss of balance, the rotten stuff.

I could go on and on with symptoms but I don’t want to bore you.

Year Three

Yes, I’m half way through my third year, my youngest can’t even remember the times when I could walk. When I used to chase him around the school playground while waiting for my older girls to come out of school.

People get fed up of you when you are sick for  a long time.  At first it’s concern;

“How are you?”

“Are you feeling any better?”

“When’s your next hospital appointment?”

“How did you get on at hospital?”

Then they get bored;

“Are you not well yet?”

“I thought you’d be walking again by now.”

I’ve even been accused of moaning too much and not getting on enjoying my life.

I’ve even been accused of competing with others for attention.

Yes, people have had enough of me and my sickness.

Do they not think that it would be my greatest joy to announce that I’ve had a treatment that has worked, that my pain has gone and I can walk again? No, for some reason I’m just a miserable old cow because I haven’t gotten any better.

The Future

Despite what some people think of me I have always been a positive person and I’ve approached each treatment with excitement and determination. Yes, it does get me down when it doesn’t work, I don’t think there is anyone who wouldn’t feel the same. I do get into some very dark places sometimes when I can see is the pain and disability and the hurt I cause others. Sometimes I think my family would be better off without me.

Then I bounce back and fill my life with happy things. I start projects that I can get excited about, something to look forward too. Plans, future plans. Even if things don’t get better I can cope if they stay the same. If I get worse then I’ll deal with that too, one day at a time.

I am working with some other Stiff Person Syndrome sufferers to gain awareness for our condition and hopefully trigger more research into diagnosis, treatments and even cures. I am reading studies, finding out all I can and most importantly, learning from others who are living with it. It seems daunting the amount of research I am doing, but it gives me a purpose and hope.

I have also decided on what I want to ask my consultant when I next see him. I’ve found out that there is a drug out there that have helped people just like me to get back some life. I don’t know if he will approve it but I’m going to ask all the same. Also, I will give up the IVIG, yes, it helps me a little but I know it’s in short supply and others gain more from it than me.

If you’ve read this far, then thank you, I know there are people out there who genuinely care. Just as I know I will never give up hoping to get well again.

 

 

Silence

It’s been a strange couple of weeks. I had a break from social media which also affected my blogging. I don’t know if the effect was direct or more because I just felt the need to spend less time online. Anyway, the break did me good and I had plenty of time to reflect. And to read and crochet 🙂

Half Term

Half term passed in a flash. I had to spend a day in hospital for treatment so Graham took the kids out. Then we had another day out at the Wildlife Conservation Centre. Then before I knew it, it was time to go back… well for the girls it was. We made a huge decision to keep the Little Man away from that school and now I am home educating him while we wait for a place at another school.

Home Education

This is not a new thing for me, both my older children were home educated for a while. And Star was for the eleven months she couldn’t go to school because of her operations and halo brace. (It was the fourth year anniversary of her cervical fusion yesterday.)  But, I did have home tutors provided for all of them.

I’m educating the Little Man myself and as I hope he will return to school I’m sticking with the Curriculum for his year. Last week we had a de-schooling week where he didn’t do much actual work, just a few activities like word searches and crosswords, and some crafts.

This week, however, we have a timetable of lessons to stick too. When it’s one to one you don’t need to spend all day on lessons which is good because it really is hard to keep him working, he gets distracted very easily. Yesterday we were learning about electronics from a science kit I bought and he loved it. So now I’m thinking of how I can make other lessons like English and Maths more interesting for him.

His reading is brilliant, he barely stumbles over a word, but he can’t read for long when he starts fidgeting and rushing the words. It’s a shame because I think he could really get lost in a book if he just showed a little patience. We’ll work on that.

Kitten

Last week while browsing the local animal adoption centre, like I do frequently, I noticed they had a lot of kittens. Three families of them. I looked through all the photos and this one jumped out at me.

His name is Ash and I had to go and see him. He was with his four sisters and they were all so cute I just wanted to take them all home. But sadly, one cat is the limit at the moment and we thought a boy cat would be best.

We moved into this house, nearly five years ago, with four cats. Now we only have one, and bless her, she’s lonely. So we reserved Ash and went to pick him up yesterday. He is adorable! We now have to slowly integrate him into our family. We’ve not introduced him to Sabrina, our other cat, yet, so fingers crossed they get on (eventually.)

 

Debs Random Writings

 

 

Lizard

a lizard on a rock, he has a v shape on his head and stripes on his trunk. He is surrounded by green leaves

Do you know my name?

 

This week I am sharing another photo from the Wildlife Conservation Park. This is one my husband took and I thought it was pretty good seeing as he took it through a glass window in a dimly lit place. When I asked him what type of lizard it was he had no idea.

He does look rather friendly though as he came right up to the glass to greet his visitors. If you have any idea what type of lizard he is I’d love to know.

I did try to remember what I was photographing and the following photo is one of mine. It’s a gorgeous little Tamarin Monkey. I could have  took him home he was so cute, although I’m not condoning monkeys as pets.

A very small and furry black Tamarin Monkey sitting on a rope in a wooden enclosure

 

You can read about our trip to the Wildlife Conservation Park here.

I think that’s enough wildlife for now, next week I’m hoping to bring you a photo or two of our new family member that we are picking up on Monday.

 

Photalife

 

Sunday Snap