Private consultation, finally.

I got my scan results back today (all normal), which meant I could actually make my specialist appointment, today & not have to postpone again.
I think I need to take some time to process the outcome.
When I came out of the consultation, everyone around me seemed disappointed & I just couldn't work out how I was feeling.
I seemed to concentrate all my emotions on feeling guilty about them being disappointed. Why do we work like that?
One minute I'm completely fine, the next I can feel a battle with my depression coming on.
I don't feel like posting anything, but it's easier than messaging each individual who cares & asks.
I waited years for an appointment with a specialist, ended up paying to go private (deep down I knew, "there's no miracle cure), just to find it not all that helpful.
So I fought to get to this day, now it's been & gone & the light at the end isn't looking much brighter. Probably a good thing, considering I can't handle bright lights ha.
All she done was go through a list of medications, similar to ones I've tried, that I'm to go through & try.
The REALLY frustrating thing is, they're actually just normal medications that ANY of the health professionals I've seen over the past 2 & a bit years could have prescribed.
They're not even specialist exclusive- I was told I'd tried all the normal medications & that the only ones left were specialist exclusive ones.
I had to pay to see a specialist, to find out I hadn't even been tried on well known medications. If one of these work, I could have been better by now. I could have been enjoying the past 19 months with my little boy I struggle to look after.
The specialist was shocked that I'd never heard of or been tried on the medications she suggested. I feel failed.
I fought so hard to get to a specialist, thinking I wasn't getting my hopes up too much. When in reality, I guess I was hoping for a miracle.
I just want to be better. I don't want to be ill anymore. I want to enjoy my little boy, & I want to take away the huge strain I'm currently putting on my family.
Im dreading the possibility of more nasty side effects, but I'm so ready for better days.
I have no idea what the next step is if this new list is all unsuccessful x

Consultation 13th August.

This is for those of you who responded so overwhelmingly to my previous posts & told me you'd be checking to see how I get on today, at the private consultation.

Well, the private consultation won't be happening today now, I'm slightly gutted, but it makes sense. 

It was actually my decision to postpone it anyway.. As those of you who read my last post will know, it's pointless going to the consultation without the scan results- I still haven't even had the scan, let alone results. 

The amazing NP at my surgery has been doing an amazing job of chasing it all up for me, but when Monday came around & we were still none the wiser, I made the decision to definitely postpone the consultation. 

It's been rearranged for the 27th, so 2 weeks today. It actually works out better for childcare etc anyway (my mum's off on holiday today, so we'd have had to take Cian with us). 

It is looking likely that I will have had the scans & results by the 27th, so hopefully no more being messed around now.

I got a phone call last night to say they weren't sure whether to do an MRI with contrast or without, or an MRA instead; they've decided to do all 3?! Yes, all 3, so I'll be going in the scanner 3 times within the next week or 2. I'm petrified of them, so along with my extreme anxiety, this will be fun. I just keep telling myself it's worth it. Which it definitely is. Roll on the 27th! (Notice how I keep wishing my life away, whoops) x

Another setback.

It's looking more & more likely that I'll have to postpone my  private consultation. 
I am absolutely gutted!
I went to the doctors today to remind them that I still haven't had the mra that was requested in May & that I still haven't heard anything about the mri I was supposed to have had within 2 weeks of going into hospital (on the 2nd July). So that's 2 scans that I've heard nothing about. 2 more ways in which I've been messed around.
Turns out both of them, despite being for different symptoms, are both to look at similar or even the same area of my head/neck. That's quite scary & yet promising at the same time.
So the nurse practitioner (I prefer seeing her now instead of the doctor, she's sympathetic) said she'll chase it up after surgery today & that they can request a scan to be done by a certain date, but 1 week is a bit tight.
The results of these scans will probably be needed for the consultation & so if I don't have them done, it's more than likely that when I get there, I'll just be told to have them done then go back. A complete waste of time, money, petrol, energy.
I've been counting down the days, & now this. I'll just have to wait & see after surgery.
I came out of the doctors & cried, a lot. My emotions are all over the place.
Then this afternoon I had a funny turn, luckily Sean is actually off sick himself so came to my rescue.
I was sitting at the table when my right side went, I couldn't even open my eyes & could barely lift my head. I needed to get comfy, but didn't have the energy to move.
Sean helped me up & supported me into the living room, while I was crying & exhausted.
After a nap & big cuddles, I'm feeling much better & looking forward to a possible visit & catch up with one of my friends this evening. I love seeing my friends because even though I don't really get out properly with them atm & I feel bad that they usually come to me, it's nice to have a catch up & laugh.

A part of me is really enjoying blogging because it's nice to get stuff off my chest, but at the same time, I'm usually quite a closed person to the point that even close friends have been shocked at some of what they've read- I keep quite a lot to myself, so knowing I have people all over the world reading my posts, freaks me out a bit if I'm honest.
Hello to you all though, it intrigues me that I've had so many views & people are actually interested in my little life haha xxx

Haircut, at last!

This evening my sister in law came over to cut my hair, it's been long overdue.

I had some taken off & a slight restyle, so I'm much happier! 

Why am I blogging about a haircut you might be wondering? 

Haircuts are one of the things I used to enjoy/take for granted.

I hate my hair most of the time, it feels so heavy on my head & I just want to chop it all off, but I know that wouldn't actually help. My hair isn't actually heavy, it's just my head can't handle it, even a hair bobble is too much sometimes, but then if I put it down, it feels like it's pulling my head down.

So I love the freshly cut light feeling. 

I have to really psyche myself up for it though, I even have to make sure it's washed & brushed. That may sound minging, but that's just not something I can do everyday.

It was supposed to be cut on Sunday morning so I got up & washed it, then struggled to brush it.. My sister in law then couldn't make it, so I cried & I cried & then felt like an idiot for crying- but just having to psyche yourself up for a haircut is emotionally exhausting in itself. 

When I'm having it cut, I really struggle to sit up straight & my head/neck/back get so tired. I sit there wishing it would hurry up, rather than enjoying what someone else would see as a pamper. I also get paranoid that my head's not straight & it will end up cut wonky haha.

I'm so glad it's done now though, & I've been feeling pretty good today as well. (I had a stomach bug yesterday, so obviously I'm getting over that, but it's still a good day illness wise)

I had to go into work for a meeting, which of course the bright lights brought on pain, but not as bad as it could have been. My vision has had quite a good day as well, the blurriness hasn't been quite as frequent, & despite my neck being so tired when I was having my hair cut, it's actually okay now.

I really want to straighten my hair to see it properly :( 

As I don't have a hair picture, here's a diffuser instead-

After we came out of my work meeting earlier, we popped into Laura Ashley & Sean treated me to this. I don't know how long it will be before the smell irritates me, but I'm enjoying it for now- rhubarb & vanilla, definitely recommend xxx 

Opticians, false hope..

Today I went to the opticians for an overdue eye test. A part of me was putting it off because as annoying as eye tests are anyway, they're extremely hard for me & also for the person carrying it out. Just an awkward situation I get anxious in.
Another part of me was putting it off because who really wants to pay out for an eye test, especially when you're not working/earning & have a perfect little boy you want to spoil as much as you can :)
Anyway, the blurriness has been terrible lately, worse than ever.
I had glasses already, partly because my vision is borderline needing them & so the optician felt with everything else, they could benefit me. But the main reason was to put an anti-glare coating on them to try & enable me to tolerate computers etc, unfortunately it never really helped enough.
So, I was kind of hoping that the blurriness was maybe just a normal problem & that my vision had just deteriorated.
If only it was that simple- my right eye (the dodgy one, as I call it) has deteriorated the tiniest amount & the left one is still the same.
What this means is that the vision problem is still unexplained & even with the new lenses, everything around me still blurs & 'jumps.'
I guess I've saved myself some money because I won't bother paying out for new glasses when they don't make any difference. It's just so frustrating being told by yet another person "wait & see the specialist."
I also have a problem with my neck, which is linked to my migraines & needs physiotherapy (the muscle is too tight, so movement is restricted & it's like my head is 10x bigger than my neck) but the physiotherapist I saw told me he can't touch it until I've seen the specialist. It's always the same. So many health professionals won't touch any of the smaller problems until I've seen a specialist for the debilitating one. 12 days to go!!