And so it begins…

chronic ilness, Drugs and medication, Lifestyle

Decluttering has commenced.

I started reading Spark Joy and it has inspired me to work towards the house and lifestyle that I want to have. The way she writes makes it sound so simple and cleansing – I genuinely couldn’t wait to start. It’s frustrating that I am so busy and unable to do it very quickly but I’m hoping that I can really make some headway with it during the Christmas break.

I started by bringing all my clothes and underwear into one place and going through them – removing anything that didn’t spark joy when I looked at it and touched it. To begin with it felt strange but after a while you definitely start to realise what gives you joy and what doesn’t. I have so many items of clothing and I am so sick of everything not being able to be packed away in a neat, organised way that is easy to see and make outfits from. I have been getting rid of clothes ALL YEAR! Still I have not achieved my goal!

I managed to chuck away a big bag of old clothes that wouldn’t be suitable to give to charity and a huge bin bag full of stuff to give to charity. But I still feel like I can get rid of more – I need to get everything together again and start comparing things to each other, to see what really makes me happy (whether it is for functional reasons or because I just love it) and stream line my collection even more.

It isn’t going to be a quick process but I can honestly say that, for the first time, I want to streamline my material possessions and keep it that way. Creating a less cluttered, more relaxing environment.

i have to say, though, this would never have been able to happen without the introduction of the prescription drug, Modafinil (Provigil is the brand name). Since having MS my fatigue has been such a huge battle. I have only had enough energy to do essential stuff (often not even that) and now this drug has boosted my energy enough to be able to consider getting other stuff done.

Before anyone thinks ‘there are other, natural, to things you can do to help your energy levels without prescription drugs’, I already do those things. I don’t eat refined sugar, I don’t eat gluten or much in the way of processed food. I eat regular healthy meals. I do yoga (when my body allows) and cycle (ditto) – and they have made a huge difference – but I was still unable to function to the level I needed. All I can say is that I understand people don’t want to have to take lots of drugs but some people really do need to. If you can find natural solutions that work for all 7 of my medications then I am all ears!! 😀👍🏻

Oh if you are interested – the film ‘Limitless’ is thought to be based on Modafinil. 

So, the decluttering will continue (energy and time permitting) and I’m hoping it will continue to give me the buzz! 

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Interrupted

Challenging Situations, chronic ilness, Drugs and medication, Lifestyle, Uncategorized

It’s funny… the minute my life began to gain momentum – I started to dream about all the possibilities and the good things I could do for others – was the moment I was interrupted. 

And not in that brief way that you get interrupted by a car horn or a low flying bird, a gradual interruption that demands to be noticed. 

It happened in two ways. Two ways that are so different from each other that it seems unbelievable that they could have a similar effect. Both have helped me and one has hindered me and I don’t know what I would be without them. 

To me, they are both male, but one is beautiful and easy and steady and the other is tumultuous and demands to be attended to in every way. 

They are both constant and cannot be escaped – one I would like to and the other I would never dream of it. 

They both inspire me to be a better person, in more ways than one. But one does that in spite of its constant need for attention, adjustment, discipline and correction. 

One takes me away from toxic substances and one inextricably links me to them. 

One I have chosen to be with forever and both have chosen that of me. 

Sometimes I wonder if I could have had one without the other, whether I would still be wishing I could do more in life if your limitations had never been placed on me. And if they suddenly disappeared would I actually achieve it all. Maybe one day we will find out. 🙂 

One interruption was perfect and rebuilds me every day and the other slowly continues to chip away – I just hope we can keep up 🙂 

Update on Copaxone (3 a week)

Drugs and medication, Uncategorized

After I had my last jab of the week on Friday it did swell up and bruise a fair bit – but I tend to find they always react more on my thighs for some reason. 

By the next morning the bruising and redness had gone down and only a sore lump remained. It stayed there for about 24 hours and then pretty much disappeared. So that’s nothing too bad. 

I did find I was extremely tired and sleepy when I woke up the next morning. I ended up going back to sleep for 3 hours as I couldn’t keep my eyes open. I’m hopeful that this is just a symptom caused by my body getting used to the new dosage and that it will even out eventually. 

It was so nice not having to think about injecting over the weekend! I felt pretty good too. So here’s hoping it continues to be a good change for me. 

Have you made the change from daily to 3 a week copaxone? How are you finding your medication? Please let me know in the comments below 🙂 

Thanks for reading!  

 

Copaxone

Drugs and medication, Uncategorized

I wanted to write this post as when I was doing my research on the 3 a week copaxone I couldn’t find very many ‘real people’ talking about the experience of changing from the daily one. I’m going to try and document as much as I can about my experience of it and hope that someone, somewhere finds this and it helps them to make their decision. I know it can be a bit scary messing with your meds and posts like this would have really helped me take the plunge. 

Since I was diagnosed last year I have been taking daily, self administered injections of Copaxone. I began by taking all of my drugs in the morning and, to be honest, it felt like a lot for my body to cope with in the morning so I switched to doing it at night in bed. This has definitely worked better for me. It means I can rest with the pain of the injection rather than needing to run around and get ready for the day.

People always say ‘I couldn’t do it’ or ‘I don’t know how you do it’ – but if it was the difference between being bed bound or not, then I believe you will learn to do most things – including stabbing yourself with a needle. I took to it pretty well, to be honest. The fattier parts of my body are almost painless to inject into – so I have found a new love for my muffin tops and belly! However my loss of appetite (that’s another post entirely) and my need to stick to a very healthy diet is shrinking those parts – I’ll let you know if that changes things!

So far (after 4 months) I feel like it has had a positive effect and hasn’t caused too many side effects. To begin with I used to get painful raised lumps that stayed there for days, but my body seems to have found away of minimising these skin reactions to the odd sore lump or a bruise.

Recently, my MS nurse told me that a 3 per week version had been developed and we agreed I would move over to this ASAP and see if it worked better for me. The prospect of only having to inject 3 times a week was an exciting one! Weekends with no jabs! (These are the kinds of things that excite me these days 🙂 )

So, they arrived on Wednesday and  I was advised to start it straight away and dispose of the surplus daily syringes with my drug delivery company. I have to say that it was a little bit more painful and stingy – but nothing particularly very bad – and the soreness has stuck around a bit longer but it really is only minor and isn’t causing me any problems.

THEN last night (Thursday) I didn’t have to inject before bed, and I know it sounds like such a minor thing but it just felt so great to be able to take my other pills and just get straight into bed – no faffing about with a needle!

Because my partner is one of the most supportive people on the planet and likes to make a fuss of any achievement we have, however small, we are going out to my favourite healthy restaurant tonight to celebrate this change of regime! It really does effect both of us as he always stays up with me so we can count the 10 seconds before I am allowed to take the needle out – it’s sort of become one of those couple traditions that occur over time in a relationship. The restaurant is called Tierra Kitchen and it’s in Lyme Regis, Dorset.

Thanks for reading and please feel free to subscribe, follow, share with anyone you think may find it useful and feel free to leave me comments or share your own experiences.

Until next time! 🙂