Someone Turned the Light On At Last !

I’ve come to a big realization this weekend. I’ve no idea if it’s due to the fact that I’ve been on anti depressants for years now and my Drs’ practice messed up, didn’t put them in my medication pack so I haven’t had any for 10 days despite trying to ring and sort it out…….

Or it may be the fact that my emotions have been all over the place as it has been really stressful at home with a number of things happening.

This time of year is always hard for so many parents trying to find pennies to make it a special day for their children. To top things off , we’ve been hit with the dreaded winter vomiting bug in this house too! My youngest even had to go into hospital with it as he was really poorly . Oh and we have vomit over most of the bedding that we own and a washing machine thats decided to brake right on cue…. Merry Christmas !

Despite all this madness I still feel a little moment of clarity.

For the last 8 years since I’ve been ill I’ve constantly been beating myself up about all the failings I felt I’ve had as a mum , wife , woman.

I have felt trapped and not in control anymore. I’ve lost all my confidence, I don’t know who I am .

I focused all my energy on getting stronger to benefit and do more in my role as a mum . I think mainly through guilt because we were so active as a family and it was such a shock when it stopped.

It’s not working. I’m not happy there are so many emotional issues around our family (not the place here to go into them) but you can imagine from the lack of support from services like young carers and other community services in the area it has taken it’s toll on everyone.

I had to take a step back. I actually wanted to wash my hands of everything as I’m so tired. Those that do know me ( not many ) but some know that I’m one determined stubborn lady at least , know that I will keep trying to see if I can find a way.

This is what I came up with….

I think I need to get stronger and build my confidence up and feel comfortable and genuinely happy in my own skin. I honestly don’t believe that I can be happy as I am and if I’m honest hoped that as soon as the kids grew to a point where I could disappear I would.

It’s totally wrong to think like this I know , I’m just being honest .

It’s not like i sit at home watching tv thinking this is going to be a rubbish day either. Partly it’s because the stuff I want to do, like doing, requires equipment and money.

There’s some lovely people in a Yorkshire mobility that will help me apply for grants but no idea what suits my needs best as it’s all about that compromise and condition then I feel guilty asking and taking people’s time but I just need to get on with it. The other thing is money. Having children I feel guilty spending on myself for myself , it doesn’t sit right. I have to say in all the 8 years its been the first time a Mobility place has ever offered such assistance which is so gratefully received.

Then there’s the other days where I just don’t feel well physically.

The truth is I deserve to be happy too and if I’m happy that will surely make me a better mum a better wife a better person?

So this is my mission and goal for 2019. Yes obviously still keeping on with building on a functional family but taking some time to build on a functional me. I need to be happy . I need to feel comfortable with me again.

Would love to hear from anyone who feels the same or has suggestions on how to achieve this 😊

Today I feel so tired,

My brain is wrongly wired.

I can’t get out of bed,

Really bad pains in my body and head.

So i close my eyes and drift away,

To all the nice places I’ll visit one day.

Think of the good times don’t dwell on the bad,

Or you’ll spend the rest of your life feeling incredibly sad.

Don’t dream too big to avoid disappointment,

Learn to enjoy the most small precious moment.

A BBQ with friends or a hug from a child,

It doesn’t have to be outrageous funky and wild.

Just have your rest and then carry on,

Hopefully for awhile your pains will be gone.

JQ

Try To Focus on Positive Times

My moods and emotions have been so up and down this year. I get so fustrated at not being able to do what I want to do . This then turns into a downward spiral of feeling like I’m never going to be able to do anything again. Yes if you compare to what I was before I got sick I’m doing hardly anything but you can’t compare , you are at the start of a new journey.

Since January I’ve been going to the gym. Prior to this I’d been on such heavy medication ( 60mg oxycontin twice a day) yet still in pain but mentally dealing with it sat a in chair .

I couldn’t live like this so I asked for an alternative. I got told if i came off oxycontin I could have Nabilone a prescribed cannabinoid. It’s a great drug for me . It helps with my muscle spasms and pain.

This was the start of things changing for me. It’s not been straight forwards . Being more active has caused a few more problems but I’d rather be active with my children than sat in a chair.

This year I’ve been regularly going to the gym. I need support there sometimes just reassurance but my fitness is getting better and the staff are fantastic.

I’ve done 20km on a handcycle as part of a triathlon at Dorney Lake with Team Brit for the Superherotri.

I’ve been on a train journey.

We went to #Bendrigg Trust as a family and had an amazing weekend.

Rode the illuminations.

Went to watch Dirty Dancing and Billyocean.

Would love to watch JonBonJovi

Set yourself goals and work towards them . It doesn’t matter what they are .

Take care

My Dream 💭

I have always wanted to take the children travelling. I always thought that as they got older the camping trips would expand further a field to France, Denmark, Holland, Belgium etc.

I wanted them to see the raw beauty of these places as I had when passing through whilst sailing or working there.

With getting sick that dream became buried along with me the person who I am. The mother I wanted to be …..

On the 16th of August I got on a train. Not only that, I drove ‘herbie’ my rascal 301viva wheelchair which has a mind of it’s own and had already thrown me out of him twice !!

I’d never been on a train before whilst being disabled and it was the first time I was going off to do something because I haven’t done anything like this before either. You can’t really prepare for it so I anxiously jumped in at the deep end or that’s how it felt.

My daughter was with me for support and the staff provided amazing assistance at the stations.

I was on my way to an event, it was the Superherotri series on the 18th of August at Dorney Lake Windsor.
The Superhero Tri, powered by npower, invites people with all kinds of disabilities to fly solo, or unite with family and friends to take on unique triathlon challenges.

I was doing the 20km handcycle, I’d joined up with TeamBrit for the day it was an amazing experience.

Team BRIT are a competitive motor racing team consisting of disabled drivers. Many are ex or serving military troops who have sustained serious injuries and are disabled.

They are a competitive racing team who race against teams of able-bodied drivers on a level playing field .

Jamie Falvey was my captain who bravely took on both the swimming and the running part of the triathlon as our runner unfortunately had an injury.

It was great to meat Sally who has been keeping in touch and supporting me and Dave who played a huge part in putting the team together and some other people.

Unfortunately after my event I was so tired and not being used to such things I couldn’t cope with too many stimulants . I wanted to but just ……anyone who suffers from neurological disorders knows what i’m talking about.

So i completed my first adventure! Now I’m thinking im invincible……. What next ?

Can I have that adventure with the support of the kids and me working together? Not hubby’s thing . We are complete opposites !!

Then there’s equipment? How would that work ? Has anyone tried this ?

You see this is me…. !!! Being sick doesn’t change who you are it just causes so much fustration because you can’t be who you want to beanymore and you feel you have lost your identity because you do .

You have to reinvent yourself but I’m still kinda struggling with that as I’m planning on shedding the weight I’ve put on and somehow get back to doing the things I’ve loved or at least be outside, outdoors having adventures with the people I love.

Or can anybody think of any other adventures that can be done on a cheap budget? For example travelling around the English coast or something?

Back to my dream, does anyone think it would be possible to go travelling with children around Europe using mobility scooter/wheelchair.

I’m interested to hear about anyone who is in similar circumstances and has maybe tried travelling.

I’m also interested from hearing from companies about their products they have to make it easier for families like me to travel.

Travel companies what offers/ facilities can you provide. Often for example to go off road one needs a large mobility scooter yet there are restrictions on sizes . Can you accommodate elsewhere on the train.

That brings me back to the same problem we always have suppliers of all terrain mobility vehicles that you can use on public transport?

I’m excited to hear back from people with their views, advice and experiences…

Thankyou

Joanne

#Samefamilynewadventures