Holiday with friends…

Hey everyone,

Before this too becomes another one blog a month post, here’s another for May!

Guess what?

I survived the holiday!! We all did!!

Remember that time when I said I was anxious about how I might look in my swimwear and if friends would be able to manage me, well, it all went marvellously well!

Though, of course, it did have its challenges. I think I become very over whelmed and begun to put too much pressure on myself ensuring everyone else was having a good time, that I forgot about myself and that meant stressing out that I couldn’t take time out for me. There were times when I just wanted my space but felt like I couldn’t breathe or get away, but by midweek and a teary breakdown, we all managed to survive and enjoy our break!

I was really please with being able to manage the feelings, and even allowing myself to have a bit of a cry instead of bottling it all up. I could have done that, but I know it would have done more harm than good.

Also, in regards to swimwear… I sent a photo to my Mum of the costume, and she said it had the design of a model, and “booby bits” which looked like eyes. So, adding the humour to that, I thought, well if a model can wear it, then why can’t I?! And I felt GOOD in it! I also felt good in my BIKINI when we went to the spa. I mean, talk about progress!

I honestly do not know where this “new me” has come from, but I like her. And I WANT her to stay. I do have the fear that I’ll sink into a depression and start hating myself again, but for the time being, I am trying my hardest to ENJOY myself and love who I am.


Since being back off the holiday, we all attended our therapy group. Of course they wanted to know the good and the bad, but despite there being a little “drama”, it was all good! We felt it wasn’t necessary to bring it up as we had all dealt with everything extremely well, and we were all very pleased with each other.

I’ve been poorly since being back (it’s only been 5 days now), and I had to take a trip to the doctors after suffering severe dizziness and nausea. I’ve been given some medication which seems to be helping, *fingers crossed*,  I just have to be careful as I can feel what triggers a dizzy spell!

One of my friends ended up unwell after our holiday, so it’s likely we both picked something up, she gets a cold thing, and I get a different virus thing. It’s been a horrible feeling, and I have so much work to do. I also had to miss a theatre show, which I was gutted about as my Wife and I had been looking forward to seeing the show for some time. We did try, but my head was just unable to focus, and when the opening scene was of kids screaming, we knew it was the right decision to leave. I’m just gutted it was a sold out show and we were unable to rebook.

I’m busy working on pieces of pyrography art for our local Pride event in June and I’m far from ready. I’m trying to pace myself and see what happens!

My coursework has been put on hold all the while I’ve been working on my art, so I cannot wait until I can crack on with that again. My aim was to finish it by the end of July, but now I’ll be looking at end of August or September. Still, it’s not been too bad I think!

I’m mentally doing really well. It’s my physical health which is taking a turn for the worst. I’m just having to take one day at a time and see where it leads me, even if it is appointment after appointment.

Hmm, I guess I’l just have to see what happens from now on.

I’ll be back soon. I want to share my weekend with you as I’m off to a “festival”… Festival of the Brain…. It’s all to do with, well – the brain! Mental health, dementia, autism, all sorts. It’ll be interesting and I want to share it with you, so hopefully I’ll have time to write some pieces up for you all to read! 🙂

Take care everyone, and I sprinkle this blog with some positivity dust for you all to share so you can take some of whatever it is in my life that’s making me feel “okay” for you to be “okay”! 🙂

Love me!



Fibro or not?

Hey everyone,

I could cry… It’s the first of May and I’ve noticed I only blogged ONCE in April. This is ridiculous. Where have I been? What have I been up to? Why haven’t I found any time to write here? It’s crazy. I do a lot of thinking about the blog, and things I could say, but it never actually happens. I even have the WordPress app installed on my phone, so why can’t I spend the extra few minutes writing a blog, than trying to fit everything I want to say into a 40 character word limit on Twitter?


I’m here now, and as we enter a new month, I thought today would be the start of something new.

Of course, this hasn’t gone to plan. I wanted to be more healthy, and exercise a bit more… So what do I do? Start the day with chocolate cake, and although I have walked about a little bit in town, I wouldn’t have said it was the exercise I was doing in my head.

Basically, I’m still having this “moment” of positive energy, an optimistic buzz… I’m trying very hard not to let the negative thoughts get in the way, such as the “It’ll all come crashing down soon”, “it’s going to go very wrong soon”, “you are such a horrible person”, “you look ridiculous, fat and ugly” … Y’know.. The typical self-critical voices.

Life has been going well, and I am so determined to focus on the wellness, and make a change…

So, aside from the fact I failed at the healthy eating and exercise path today, what other changes have I been getting up to? Well, as you may know by now, I have a diagnosis of Fibromyalgia.

Now, I’ve had this “label” since 2011, and I’ve still been fighting for answers, support and reasons for why “this, that and the other” don’t feel like a typical “fibro” pain/symptom.

I’d finally been referred to an Orthopaedic Specialist, and my appointment was on Thursday just gone. I’d been referred because I have a “dodgy” left shoulder. I’d had an x-ray and MRI and neither showed anything serious with the joint. Except, I have had to explain it’s not the joint I have an issue with but more of the shoulder blade. This become evident by the specialist who said that he could see the movement was not as it should be and explained it was something to do with the lack of muscle. He’s suggested a localised pain reliever injection (which to be honest, I didn’t really fancy), rehab on my shoulder, and working up muscle strength all over such as swimming (I HATE SWIMMING!)

Now, the most interesting thing about the appointment was that a) He finally could see there was an issue with my shoulder and I wasn’t just told it was “Fibromyalgia”, but b) He wondered IF I actually HAD Fibromyalgia!

He asked me how I was diagnosed and who by… (Tender point test, ruling other disorders along the way out via blood tests,and by a now retired rheumatologist.) He has decided to send me for a CT scan of my shoulder blade, for peace of mind that there’s definitely nothing sinister going on, but also referring me to see a new rheumatologist… I’d seen one since the other retired, but I was fobbed off by “It’s your fibro”, and this guy says that although he’s not an expert in the fibro/rheumatology department, he knows enough about it to say that he feels as though that is not my issue. After all, he managed to rid of another diagnosis – HYPERMOBILITY. I know I’m hyper mobile in my elbows, but THAT’S it. I always wondered why they said I was, even after some of the tests!

So, despite an elimination of one diagnosis, and a possible elimination of another… We know that there is still an issue – a muscular issue, and it’s working out why.

I’m your average person, not much exercise and I do “normal” things, so I shouldn’t be suffering as much as I do. For example, I took my wife away for the night, for her birthday and I was in pain for walking around Brighton town. Then today, the day after we’ve been around the town, we visit our home town, and I’m not just in pain, but feeling nauseous and darn-right ill from exhaustion and pain in my legs. Yet my wife, not a problem. I’ve sat on the sofa, after taking some painkillers and muscle relaxants and my body just wants to give up. I’m scared to move!

What is wrong with my body if it’s not Fibro?!

Oh, one thing I should also say is that I’m trying not to walk with my walking stick. This might sound like an easy thing to do, but I can assure you it’s not. I still need my wife arm to hold and still need my stick for stairs, but I’m trying to walk on ground level without it for short distances, and trying to extend the length of time too. Of course, the past few days I’ve had to use it, but it’s definitely my aim to stop using it, as I’ve been with it for almost 6 years now, and I feel enough is enough. I need to use it for those emergencies instead of relying on it every day otherwise of course my muscles are going to slack. Have you tried to get rid of your walking aid? How has it affected your illness?

There’s a few more things going on lately, I’ve booked a stall at a local festival, except this means making things and I’ve not got much time to do this, especially as I’m away for a week of May and the festival is the beginning of June! I can see myself running very low of mental and physical strength… So I need to remain POSITIVE.

Please send me lots of spoons and positive vibes to keep me going!

Thank you!

Speak soon,


Ps; don’t forget you can follow me on Twitter, find me here: @ghostwithinme !!!