Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: Year Page 1 of 14

2019 is flying by already!

I can’t believe it is now the later end of January, in some ways it still feels like Christmas was just yesterday! (Admittedly this is probably partly due to me not having the energy to find spaces for the wonderful Christmas gifts I received and thus there is still a Christmas stocking full of them in my room…)

I haven’t been feeling the greatest in recent weeks, despite the relatively mild temperatures until last week, my joints have become increasingly painful, and this has made sleeping that bit more difficult. This latest cold snap has just increased that a bit further.

Whereas I had built up to managing a shower every other day, I am now back to managing it twice a week. I’m grateful I’m still managing that as I remember times when showering once a week was an achievement. But I do hate having greasy hair, and unfortunately I am not blessed with hair which doesn’t become very greasy after a few days. I’ve reacted to all the dry shampoos I’ve tried, either that or they’ve just made my hair even more greasy. So I’m looking into other options to try and make me feel a bit better about things in between shower days.

I have however been managing to get back to my card making, something I always used to enjoy and am back to enjoying. Recycling old Christmas cards into gift tags, and new Christmas cards, as well as creating birthday and thank you cards. It’s slow going but it’s something which takes my mind off things and gives me something to do which I can pick up and put down as and when my health allows.

I am also looking for a new bookcase for my room, so I can hopefully (eventually) create some order out of the chaos that currently reigns in there. The trouble is the size of the room means I have to be very fussy about the size and as yet I have failed to find one which will fit. I’m willing to compromise but every compromise we’ve come up with so far creates another problem! Fingers crossed I’ll find something soon though.

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2018 A Review & 2019 Plans

So it’s been a busy year in 2018, more to do with health stuff than anything else and so my list of goals got somewhat forgotten!

  • Meet some of the fantastic friends I’ve made online through university and M.E. groups. Unfortunately I have yet to manage to arrange this, but it will roll on to 2019 in the hope I will finally be able to arrange meeting up with some of my amazing friends.
  • Finish decorating my room. This one still isn’t quite done but I have made significant progress on this front; the heating is now sorted, another wall painted and shelves painted. There is just a wardrobe left to paint, a little bit of wall where the radiator used to be to paint and a bookcase to find, purchase & build! (Thank goodness I have a lot of help in doing all this!!)
  • Attend the church carol service. Unfortunately due to my health and the plans for Christmas I was unable to attend the church carol service, but there’s always next year.
  • Try and find a suitable job I can do from home and manage with my health. This well and truly failed miserably, in fact I have been forced to admit that right now I am unable to work and started claiming benefits (a nightmare in itself), hopefully my health will improve and I will be able to find something manageable in the future but right now doing anything for more than 20 minutes at a time is ridiculously difficult.

So having gone through all the plans I had which I didn’t manage to do, it’s time for a more positive look at 2018, the highlight of which has got to be being a bridesmaid at my best friend’s wedding! They did so much to accomodate me being able to be there, and although I missed out on seeing their first dance, I did manage the majority of the day. It was well worth the week or so of severe payback which followed!

The other good thing that stands out for 2018 is all the things which have gone on healthwise; referrals to the CFS Clinic (although the experience hasn’t always been positive, see here for more, the Occupational Therapist seems to be understanding and helpful thus far), wheelchair services where I was provided with a wheelchair more suited to my size, and finally a specialist cardiologist in London to investigate the dizzy/fainting spells I get, the current theory being Postural Orthostatic Tachycardia Syndrome but that appointment isn’t until May 2019 so we’ve got to wait and see what the specialist says.

Now for 2019…

Obviously the some of the goals for 2018 have got to be carried over as I still want to do them:


  • Meet some of the fantastic friends I’ve made online through university and M.E. groups.
  • Finish decorating my room.
  • Attend the church carol service.

But really and truly I need to add a few more which might be easier to achieve too, so…

  • Learn to crochet something other than granny squares
  • Learn Python programming
  • Blog a bit more than I did in 2018, including book reviews and all sorts.

I’m still struggling to think up goals which will be achievable and make the end of the year feel somewhat better than this one does – it would have been nice to be able to cross off at least one of the goals that was on my original list, but here’s to making 2019 a better year than the last.

2018 certainly had it’s challenges but we have muddled through and there have been some wonderful highlights during it too.

I hope you all had a wonderful Christmas and New Year, here’s hoping 2019 brings great things to us all.


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2017 Review, and 2018 plans

I’m sorry for being so quiet in 2017. Unsurprisingly the first half of the year was dedicated to completing the final module of my degree, and since then I simply don’t know where the time has gone!
Back in January I revealed the plans I wanted to achieve for 2017, and now I guess it’s time to see if I have managed to tick them off:
Pass B301 and thus get my degree!  Yes I did it! I passed B301 and gained an Upper-Second Class Honours Degree!!
Graduate from The Open University (Ceremonies are optional but I really want to attend one, just depends where and when I can book one) Ok so I didn’t manage to attend an official ceremony, but I did graduate from The Open University!!
• Meet some of the great friends I’ve made online through university and M.E. groups. Sadly this is one thing I haven’t yet managed to do, and thus will be something I hope to do in 2018.
Walk up the road to the corner shop (or even better the tearoom!). I have done this once or twice on crutches, (but not the tearoom) and also walked a bit of the way back from town using my wheelchair as a walker, so it’s a start. Here’s hoping a bit more walking can be done next year.
• Go to the church carol service again. As I write this ahead of Christmas (I am trying to pace myself! 😉) the plan is to go to the carol service on Sunday. Hopefully I will make it again, I miss going to church but at the moment the carol service is the only service I manage each year.
• Redecorate my bedroom. Well this one is a work in progress, so I don’t feel I can cross it off just yet but the room is being redecorated and beginning to look nicer, although it is frustrating that everything is packed away!
• Start thinking about what I’m going to do post-degree. Every time I start doing this I hit a road block and give up for a while. But I’ll figure it out eventually, it’s just a case of finding something manageable.

Now for 2018 I aim to….

  • Meet some of the fantastic friends I’ve made online through university and M.E. groups.
  • Finish decorating my room.
  • Attend the church carol service.
  • Try and find a suitable job I can do from home and manage with my health.

There’s fewer this year as I have been struggling to think of some which are achiveable. But hey, I can always add to the list throughout the year right?!

Anyway I hope you all had a wonderful Christmas & New Year, here’s to 2018 bringing great things for us all.
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