coldutewarmheart

It's been a while since I've updated on here about everything.. I last posted on 15th July, when I'd recently found out about my impending return to hospital. Those of you who follow my Instagram (@Jess_ME_CFS), Twitter (same) or Facebook ( fb.com/jesscfs ) will know both that I'm not in hospital yet, and I've had a bit of a rough time just recently.. Let's start on a more positive note. Last time I did an update post, I was about to head off on a week's holiday. Despite not sleeping well, and a day where I was unwell, and another where a seizure interfered quite a lot, overall, I coped well, and had a lovely time. It was a much-needed reminder that I can still experience a degree of normality despite everything. And knowing I was going to be returning to hospital in the not too distant future just made it all seem sweeter in a way. It was lovely to spend some nice time with my parents and a couple of close family friends, and I even met up with a friend who...

I have been given these products by the sites mentioned to enable me to write this post. Although the products were gifts, all opinions in this review remain my own and I was in no way influenced by any of the companies . The 3   products I am reviewing are the NRS Healthcare Kura Care Cutlery Set from NRS , the Comfort Grip Cutlery Set from Stress No More  and the Red Handled Cutlery Set from Co-operative Independent Living . I decided to write this post due to my own difficulties using standard cutlery (as a result of weakness in my hands from several conditions, reduced dexterity, and significant fatigue-related difficulties), and the fact I have become aware both of the number of potential options when purchasing adapted cutlery, and th e difficulty obtaining useful advice or comparisons; I decided I'd like to write a blog post to help others in a similar situation to mine by exploring and demystifying the various options.  Many thanks to all 3 companies for their en...

I found out on Wednesday that I'm going to be admitted into hospital again. Shocked is an understatement. I wasn't expecting it at all. Not one bit. Even now it doesn't feel real. I'd gone to hospital for an outpatient appointment in a spasticity clinic with a rehabilitation medicine consultant. I thought it was a case of assessing whether I had spasticity and if so deciding whether to go down the route of Botox injections or muscle relaxants. I thought that was as drastic as it was going to get.. I arrived at my appointment to be greeted by the consultant, another doctor, and a neuro-physio. As some of you know, I have medical/post-hospitalisation PTSD, following some traumatic experiences and an incident where I was treated  abusively by 2 members of staff. Hospitals and I don't mix well, so I was pretty anxious. She started taking a bit of history about how I ended up how I am. It's always hard to know where to start given that I've had chronic conditions...

It's now 9 months on from my first non-epileptic seizure ( or the dystonic reaction that triggered them- debate with my doctors, they don't know) and being admitted to hospital. The last year, and particularly the 3/4 of it with FND, has been such a rollercoaster: physically, mentally and emotionally. But, I've lived to tell the tale, I have friends and family that love and support me, and professionals doing their best for me. I don't pretend a single day is easy, because it isn't at all, and the pain and suffering are overwhelming at times, but I have amazing people in my life riding this rollercoaster with me, or willing to step aboard as needed. My PTSD is a constant nagging reminder of how awful humans can be at times, but although my PTSD doesn't like me to believe it- they are certainly outnumbered by the good ones. No-one will ever convince me that there aren't bad people, that they aren't where you'd least expect them, or that I won't c...

This week I had my CFS service initial assessment (I've had CFS since 2009, but had an initial assessment due to starting with a different team after moving areas). It was positive and the person I saw was really great. She spent a couple of hours with me, and got a good grasp of my current situation and how I've ended up where I am, and took time to understand things from my perspective. Some of what we discussed, I hadn't anticipated discussing, particularly trauma-related stuff, so that was quite hard, but called-for, and I liked the way she went about it- never pushing me into discussing things I didn't feel able or ready to, and never making me feel unbearably uncomfortable. I always find discussions around the mental health aspect of my problems (and the events that have caused them) difficult, but the lady I saw was understanding, empathic and supportive. I haven't come away feeling full of optimism and hope and positivity- she's not a miracle worker- but...