Road to recovery? I hope so.

So, as it's been over a month since I last posted, I thought I'd do a little one now..

Looking back, I'd say September was the best in a long time, but it didn't come without some really bad days & an awful awful medication! The good news is, I'm now off that medication & on a new medication which so far (2 weeks in) seems to be the best yet.

It can be quite a nasty medication, so I have to start on a really low dose & gradually increase, to reduce the risk of side effects.

It's still a long way to go until I'm bouncing around, but I can already see some benefits & I'm REALLY hoping that as we increase the dose, the symptoms get better & better. 

I really want (need) to get back to work & only a few weeks ago, this just didn't seem possible, ever. Now there is some hope. 

I'm going back to the doctors soon for a review of the medication, but also to talk about putting a plan/exercise programme in place to gradually increase my activity & also strengthen my right side. I'll also be starting physio again on my neck, which is going to enable me to do so many more things I currently can't manage (if it works!). As you can probably tell, I'm feeling more positive than I have in a long time! I'm so hopeful for this new medication & I just hope things keep on improving as we increase it, because as much as it's better than any other Ive tried so far, my daily activities are still very restricted. Plus there's the fact this is the last medication on the list from the specialist, so if this doesn't work, I really don't know what's next. 

Hello September.

Firstly, I can't believe it's September already?! Less than 4 months & my baby turns 2!
I'm holding my hopes really high for September. Despite the consultation not going too well & me still having several unanswered questions, I'm really hopeful for the new medication (not that I've even started it yet).

I stopped my old medication (which I hated) about a week before the consultation & although I'm obviously still really ill, my eye is a lot more 'open' than it was. I hated that medication from the day I started taking it. I thought the medication was to blame for my slurred speech, turns out that's just another migraine symptom I've got.

I'm so ready to get my life back.
I've got some good plans for September, something planned almost every weekend in fact, but whether I'll be well enough to attend them all, if any, is a different story :(

Back in February when I first got really ill again & I was being messed around, again. I said if they don't hurry up & make me better, it'll be September & I'll be ill anyway with my seasonal affective disorder. How very typical. Although that never really hits me until towards the end of September, so we've still got a few weeks for me to get better & enjoy some energetic times.

It's weird because having Cian changes everything so much, like I know, no matter what, I always have to keep fighting, for him.
& then the one thing I keep confusing myself about is the fact that other than Cian, this has been possibly the worst year of my life.
Not only have I had all the problems with my illness, but I've had a lot of other stuff going on that I won't ever disclose the details about on here. Every single time I've felt like I just don't have any more strength in me, another thing has happened & I've proved myself wrong- I'm beginning to think I'm superwoman ;)
Despite it being some of the worst times of my life, Cian gives me the best times I've ever had. So how can I say it's the worst year, when it's only my second year with him?

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!!

Chronic illness.

A little bit about the illness currently ruling my life.

For as long as I can remember I've suffered with migraines, I don't mean headaches, I mean actual migraines. Incase you don't know the difference, I'll most probably blog about that sometime in the near future. 

When I was 11/12, I was actually taken into hospital with suspected appendicitis, which actually turned out to be an abdominal migraine. 

Abdominal migraine

One memory I have of secondary school about  a teacher I otherwise liked, was a comment he made in front of my whole class, which partly left me feeling silly, but also left me laughing at his stupidity. Long story short, I'd been off for a few days & when he found out the reason, his response was "so you have a headache in your stomach? A headache is in your head, not your abdomen." 

Yes sir, I know a headache is in year head, but you clearly don't know that a migraine isn't a headache. 

I can't quite remember when it was that my abdominal migraines progressed into your 'ordinary' migraines, but that was sometime in my teens. They weren't too often, but when they happened, I'd be stuck in a dark room, praying for them to end. For a while after the progression, I would sometimes get an abdominal migraine too. Apparently abdominal migraines are more common in children, & now I very rarely get pain in my abdomen when I have a migraine, so I'll agree with that. (Migraines are very under researched, so a lot of the medical information isn't necessarily that true to sufferers.) 

Chronic migraine.

The word 'chronic' changes everything. For me, chronic means symptoms of some sort 24/7. Yes, even when I'm sleeping. 

March 2013, I'd had what I thought was just a bad headache for a few days, until after work one evening when things got a lot worse & I ended up at the walk in centre late at night. 

I now know bright lights & computer screens are massive triggers for me- I work in a supermarket on checkouts, so this makes perfect sense as to why things got so bad at the end of a shift. 

Diagnosis 

After an emergency appointment at the head & neck unit, with lots of nasty diseases being mentioned, an emergency mri for a suspected brain tumour & several tests, I was sent the to the neurology department where I was diagnosed with Chronic migraine with aura.

By this point I had fallen pregnant with my now 19 month old little boy, so treatment of any sort was put on hold. I spent the whole of my pregnancy signed off work, with many days spent in bed.
I had to quit college, which meant I didnt meet the conditions for my offer to study psychology at a top university.
I even got a migraine in the early stages of labour, which was absolutely awful & the vomiting dehydrated me to the point that I was put on a drip to have 2 bags of iv fluids. I much preferred the later stages of labour, once the migraine had gone & my energy was back :) 

Most of my maternity leave (post birth) was relatively migraine free, I assumed I was over that terrible phase of my life. Little did I know, it'd be back, a whole lot worse.

February 2015 

Off I went to the doctors, struggling to cope with how restricted my life was. I left the doctors with my first lot of preventative medication, as recommended by my neurologist & a sick note. 

The medication was awful, the side effects were unbearable, back I went less than a week later, to be sent out with a different medication. This went on for some time, each time being signed off work even longer & each medication either not helping or having horrendous side effects. 

My doctor finally decided something needed to be done, I can barely look after myself, let alone my little boy. He sent me back to the head & neck unit, pointless, they couldn't help me last time.
After this, a referral was made to a specialist at addenbrookes, but I was warned I could be waiting up to a year.

 July 2015, the ambulance.

I won't bother going into detail, but basically, I woke up, home alone with Cian, quite poorly. I phoned 111 for advice & an ambulance was with me within minutes. 

I was taken into the major department of a&e with stroke like symptoms. I've always been scared of hospitals & I had to go in the ambulance all on my own, I've never been so proud of myself.

I was just starting to feel quite down & lonely when Sean walked round the corner, I didn't even know he'd left work. I've never been so happy to see him! 

We spent the morning in a&e, followed by the afternoon in acu.

More tests were carried out & I was told I'd be back within 2 weeks for an emergency mri, just to rule out a couple of serious things. (the mri still hasnt happened, just one of the ways in which ive been messed around. The list is long, unfortunately)

If the mri comes back clear, it'll be official that I'm now suffering with hemiplegic migraines, also. 

Hemiplegic migraines

These are possibly the nastiest of the lot, for me. While the pain is nowhere near as bad & sometimes non existent, the temporary paralysis is scary & completely debilitating. I'll sit there & tell my arm/leg to move & it just won't do it & I'll be stuck & my brain just won't send the right signals. I usually end up stressed & crying, but I guess in time I'll find coping mechanisms. 

Going private. 

It's been a very long 2 & a half years, & many things I should be enjoying/doing, I just can't. Maybe if I hadn't been messed around so much, I might be living a relatively nomal life  by now, who knows. 

After the ambulance incident & things getting worse (I've also recently been diagnosed with severe anxiety & severe depression, which is massively to do with this), my extremely supportive mum decided she cannot see me live like this anymore & so we're going private!!

I have my first consultation on the 13th August & I've never been so hopeful for anything in my entire life!

If you've got to this point, I just want to thank you for reading this extremely long & possibly boring (I tried not to ramble or go into too much detail) blog post xxx 

Hey, hi, hello, welcome

Hello ☺

So, I'm new to this blogging lark- I may sound like an idiot, I may even give up after one post.. suggestions welcome :)

What made me start a blog?

Well, for some time now, I've taken pleasure in reading other people's blogs & with everything going on in my life, I decided what better way to express myself than to blog. That way, if people want to read, they can, if not, they don't need to see it..

A little bit about me-

I'm 21, going on 90. I have a beautiful 19 month old little boy, called Cian. I'm very much in love with his daddy (Sean) & we own a lovely little house together, which is my complete sanctuary. Time spent at home with just my 2 favourite boys is perfect to me.
I spend a lot of time at home; I can't work & I can't drive, due to this horrible chronic illness I have.
I'll do a separate blog post specifically about my illness, but let's just say, right now it's ruling my whole life.

Thank you for reading, like I said, I'm new to this xxx