It’s not been the best of time for me health wise, after catching the kid’s sickness bug I seem to have been knocked off my feet, almost literally!

It’s made me think a lot about my illness and how it’s progressing. I don’t like it, and I don’t like my family seeing me like it either.

This is not my usual state of mind. I probably get on a lot of people’s nerves but I’m really a ‘cup half full’ type of person. It’s strange really when my life hasn’t really strolled along the easy path, it’s definitely been a slow mountain climb with lots of crumbling rocks on the way.

Maybe that’s why I’m a positive thinking person. If I focus on the negative then I’d probably be a very depressed person right now. That doesn’t mean that I’ve never suffered depression, I have quite a few times, but these days I am well aware of the warning signs and I know the best ways to keep it at bay.

So, what have I been up to this week?

Well, I’ve got a new hobby! I have always been interested in papercraft but I’ve never been the arty type. I’ve decided that I’ll give it a go though and I’m making some cards. I’m using my favourite resource, Pinterest, to get some inspiration and I’ve been buying some bits and pieces to get me started. Okay, I know you don’t absolutely need a die cutter for starters, but I couldn’t resist treating myself to one.

Here’s my first attempt.

 

I’ve even ordered myself a cabinet to keep my bits and pieces in. With this and my crochet I’m going to be keeping very busy.

Talking about crochet, here is my latest creation.

 

The request for these keep coming so I can see myself making more. I’m also working on a big blanket with a CAL (crochet along) but that’s a year long project. I am loving it already though and can’t wait for the finished product. I can’t decide whether I prefer big projects or little ones. Last night I spent about an hour crocheting this jammy dodger tape measure cover.

 

I think now you may be able to see how I cope with my illness…I occupy my brain and my hands 🙂

 

Debs Random Writings

Don’t look forward, look back. Now, that is not my normal advice. For every step of life you shouldn’t dwell on the past but on the future. Keep on striving for what you want, there is always room for improvement and you have to make the best of your time on this planet.

In my own case, why should I look back on the past where I could walk and do so many things I can no longer do. I should look forward, think of how I can heal, think of how I can be better again.

But in this case I’m looking back, simply as a time scale. You see, at the moment I feel like I’m stuck in a 70 year old body, the pain, the immobility, the inability to live a normal life. I’m not 70 though, I have 18 years to go until I am 70. But 18 years doesn’t sound a lot does it, it will pass in a flash and if I even make it that long I’m going to be feeling 70 for a very long time. I look at friends and peers and think that they don’t look so aged as me, they are still enjoying life to the full, still working, still having fabulous holidays, still doing all the things they did before and even more because their kids are all grown up (or growing up quickly.)

So, I’m looking back.
Let me see, 18 years ago I was a single parent of two youngish children. I was working full time and juggling everything a single mum does. I was trying to date, whenever I could get  a babysitter that was. Then my world exploded, exactly 18 years ago, and I almost lost everything including my sanity. I did lose my job and almost lost my home, I certainly lost my family apart from my two children and one of my brothers. It was a very low time for me indeed.

Then over the next two years I began to build things up again, I met my current husband, we started enjoying life again. I went on to have three more wonderful children and we moved from a very crowded small house to the lovely big house we have now. We built up to a stable and happy family life. Yes, we had our ups and downs but doesn’t everyone? 18 years ago I was rock bottom, but now it seems like a lifetime ago.

It only took me two years to get out of that awful place I was in 18 years ago. If I can improve my health and my life in the next two years then I will have plenty of time to carry on enjoying my life before I become a 70 year old in a 70 year old’s body. In fact, there are many of 70 year old’s and even older having a good life.

I’m going to fight this, I’m going to fight for a better life.
I know what I have to do and I’m going for it.
I’m not waiting for my miracle to happen, I’m going to make it happen.

I’m looking back because 18 years ago life was shit and I made it so much better.
I’m looking forward because I can feel 70 in 18 years, I’m not going to give in to feeling it now.

 

School Runs and Shopping Trolleys
Debs Random Writings
Naptime Natter
Monday Stumble Linky

Last week I went to A&E because I really thought there was something wrong with  my heart. It felt like someone was sitting on my chest, crushing me and making it hard for me to breathe. I called my GP but I was told to go straight to A&E. I was given a red card on entry which meant I was seen straight away. They put me on a ECG monitor and checked me over. Then I was to wait to see a Doctor. As I was waiting over two hours I figured that they’d worked out that I was not having a heart attack.

I saw the Doctor and after lots of questions and further examination, and a consult with someone higher up the decision was that my pain was due to my condition, Stiff Person Syndrome. There was nothing they could do for me and I had to see my consultant for treatment. They couldn’t contact my consultant so that’s up to me, but I have an appointment in two weeks so I’m not sure they will see me any sooner.

For now I just have to deal with it an accept that this pain is yet another one I am going to have to get used to.

I also have been getting pain in my arms and hands, getting dressed has been really awkward. Again, I’ve been told it’s due to my SPS which is progressing. I was affected from my waist down, now it’s from my neck down. No, from my head down because I also get triginemal neuralgia which is another symptom of SPS and affects my face.

My first reaction to the news was to panic. I sobbed. I don’t want it to progress so soon, I knew it would eventually but it’s not even been two years yet. A lot of people with my condition (which is not a lot really because it’s so rare) have died within three years. The positive side to this news (for me anyway) was that they were not diagnosed in time and did not receive the right treatment. I’m extremely lucky to have been diagnosed so quick, and there are treatments available, so I’m still hopeful. What I am worried about it my consultants lack of concern, he didn’t even follow up to see how my last treatment (in June) went. I’m going to have to be firm with him when I see him next. I can no longer wait six months between appointments, if he’s too busy to fit me in then I will see someone else.

So after my self pity, (I really don’t want to lose my hands and arms, if my legs don’t want to get better I’ll deal with that but I can’t lose my upper limbs, I just can’t) I’ve decided that I’m going to bring out my fighting spirit. I’ve researched all the treatments that might work and I want to try them until I find one that does work. Of course, I would have to get the rarest form of an extremely rare condition, which means my consultant will have fight for the treatments, but I’m determined not to give in.

I also need to be pro-active. I have let my diet slip again and I do get lazy. Activity causes me pain, but if it’s the only way to keep my body doing what I want it to do then I need to be more active. I will walk more, I’m thinking of getting some of those comfortable crutches that support the arm so they don’t feel all the stress of holding me up. I have a friend who is great with alternative medication and although she’s been having a rough time this year with her own issues, I think she’s ready to start advising me again now. I am also in contact with other sufferers which helps a lot.

Sometimes I think that, you, my readers, get fed up of me harping on about my condition. But, this is my place and sometimes I just need to share. It makes me feel better, writing things down can be so cathartic and sharing my story may help someone else in the future. I know that reading another sufferers story as helped me, she’s into her 16th year and it’s been really rough for her, but now she has found the right treatment that works for her and is enjoying life again.

Just a couple of weeks ago my wish would have been to walk again. Now, that’s just a dream, a bonus. My wish now is that I can stop this condition from continuing it’s progression.

One thing is for sure, I won’t give up. I haven’t tried half the treatments that are available yet, and as much as I despise the thought of being on medication for the rest of my life, if it gives me more life then I will take it. I have children who need me. My husband needs me. And I don’t want them to be my carers I want to be the best I can and the only way to do that is to fight this illness and not let it get the better of me. It won’t win, I will! 
School Runs and Shopping Trolleys

Debs Random Writings


Photo by crabtree on Unsplash
Photo by Alex Cagwin on Unsplash

This week seems to have passed in a blur, you know, one of those weeks when you have no idea what day of the week it actually is. I didn’t even realise it was Friday this morning, so I’m writing this post last minute.

Monday we did the food shopping with the kids in tow. Not one of my brightest ideas I admit. I find shopping totally exhausting and the kids find it boring, so it was a recipe for disaster. However, I’d already done half the shopping online so we could skip several aisles and I had reward vouchers that I gave to the kids to spend.

So we set off to our local huge supermarket. The kids chose their gifts pretty quickly, and then we were off. I just wanted to select the fresh produce myself for a change, so our aim was fruit and veg, meat and fish and fresh bread. Of course the kids had to have cakes too. We didn’t do too badly, until I came to the checkout. I had a budget, seeing as I’d already done half the shopping online. I nearly died when the tiller asked for nearly twice as much as my budget!! I’m not going to the supermarket again!

My hubby Graham has been spending a couple of days this week helping my brother and sister-in-law with their house move so he’s not been around so much. The kids have spent more time on screens that I would like, but I’ve not had the energy to do much with them. I guess that’s why one day has blurred into another.

We did venture out again on Wednesday, to the clinic for Star. We watched a rather informative You Tube video called ‘The Poo In You,” go on, check it out if you have five minutes. Anyway, the bad news is that Star still has a big problem and we still have a program to stick to, which we are hoping will help.

That’s two days out this week, so Thursday left me exhausted and I also felt ill. The smallest illness can have the most drastic effect on my body and the kids have had colds this week so I guess they’ve passed the germs on to me. Yesterday I spent a lot of time in bed.

Last night was the worst I’ve had in a long time for spasms but thankfully I didn’t fall out of bed. I’m just glad that I finally got through to my consultants secretary this week and managed to get an earlier appointment. My appointment was in October, now it’s in September.

Also, this week, I’ve managed to spruce up my kitchen with some new items, including a new toaster which is much nicer than the last, and I’ve read a book. My week may seem a little tame in comparison with others but I think I’ve achieved a lot despite being ill. (More than usual) It’s the illness that’s blurred one day into the other.

The Reading Residence

Our Summer holiday is half way through, we still have another four weeks to go of this extended holiday. So far we have, had a birthday party, visited relatives by the sea side for a weekend, had another, quieter, birthday lunch and have been out to the shops three times. It doesn’t really sound a lot for four weeks does it?
For me it’s been exhausting.
It seems that every time I leave the house I need at least two days to recover. Also, we are still having major problems with Star and it’s so difficult to get her out.
This is not the summer holiday I wanted. I wanted to make it one they would remember. A really good happy time with lots of fun. I don’t know what sort of condition I’ll be in next summer as I feel myself getting worse day by day.

I got really upset this last weekend, simply by reading other blogs. It seems that everyone is off on days out, going to festivals, enjoying holidays. Doing the normal things you do during the summer holidays. Doing the sort of things I wanted to do. But my stupid body won’t let me.

We had a lovely weekend in Dorset, I really enjoyed the break from routine, the sunshine, the change of scenery and the fact that the kids had a good time. What I didn’t enjoy was not being able to get to places, the fair was a nightmare for my wheelchair. I couldn’t get on the beach and play with my kids. I wanted to sit in the sand and paddle in the sea. I wanted to run around and play with my kids. I wanted to go over the rocks hunting for  fossils.  Instead I was often left behind on the promenade. I love being by the sea, just taking in the air and the scenery was lovely, but I felt I was kidding myself because I wanted to join in too.

Two people hugging with the text, sometimes when I say I'm okay I need someone to look me in the eyes, hold me tight and say, I know you're not

Every time we plan to go out we have to take into consideration my wheelchair. Will I be able to get around, will there be parking close by for me? If it’s outdoors I have to consider the weather, it’s an electric chair, too much rain is not good for it. (or me)

Even a simple shopping trip can be difficult. What if there is a missing drop kerb? We went to a shop the other day, the disabled bays outside were full so we had to park in the regular car park. There was no drop kerb so I had to drive along the busy road to a zebra crossing before I could mount the pavement.

We bought a National Trust membership this year, which is great, I’ve a long list of places to visit. But National Trust properties don’t have lifts so I’ll never be able to see upstairs. Also, I can’t take my powered wheelchair into the properties at all, so I only get to see as much as I can walk with my sticks, which is usually not a lot. If it’s a nice day I can get around most of the gardens, until you come to steps. And most gardens have steps.

Yes, I’m feeling sorry for myself today. I have been all weekend. I hate that this has happened to me. It doesn’t make me feel any better thinking that there are people worse off than me. In fact I feel even worse because I feel so bad for them too.

I’m lucky that I have my lovely, understanding family. But, I don’t want their lives restricted just because mine is.

My hopes of a fun filled, memory making summer are slowly drifting away.

But it’s not over yet, I need to fight this, I need to turn it around and make things even better. Stop feeling sorry for myself and let my kids enjoy the experiences even if I can’t join in.

Just not today.

Dark blue image of man and the sea and the text, Today I'm feeling Blue

Mummy Times Two