Update

So, it's been a while, sorry about that. Since Annie passed away we've kinda been so busy with life in general that I haven't really had the time or energy to update here. We've got a nice little happy surprise in our life now which we'll be keep secret for a little while, but it's something positive in the middle of everything else that's so bleak. (No I'm not pregnant, or engaged!)

I've had to give up the gym, sigh, I was hoping I could just stick at it since it made me feel so good, but in all honesty, I never had the energy to actually attend so it was a money sink and well... I couldn't keep up with it. Just feels like another notch against me, having to drop something else I once enjoyed.

A friend of mine who also suffers with ME/CFS  has been incredibly helpful in the past couple of weeks. I'm suffering more than usual with aches and pains and something she's recommended me trying is crutches... now I'm open to suggestions of any treatment and help, but something that visibly shows a disability is a little daunting. My knees ache something awful, especially if I've used them... or even if I haven't - they seem to just be blocks of pain. I also might be entitled to some financial help from the government? When really sick I applied for DLA, but was declined after they didn't even read my form that I had sent off to them describing my sickness, so went purely off my atos assessment, oh joy. (That was over a year ago, and something I've got a draft waiting on as it's so tough to write about). Anyway, apparently because I work 16 hours a week, I might be entitled to ESA which I think is being changed to PIP (Personal Independence Payment). Which would give me a little extra money a week... kind of to make up for my lack of ability to work more.

I'm looking at applying for it, but I'm worried because of my medical history in regards to turning down treatment. (Something else I need to post about) but to sum it up, I refused hospital therapy, which was basically CBT and teaching people how to pace and stuff. The trek to the hospital itself was absolutely exhausting, I still have all my information from my previous CBT sessions and know how to pace. I didn't see the point in taking up a space that someone else (who hasn't had past experience with those therapies) could use. I'm also not currently on antidepressants as I felt they made me more nauseous and headachy than usual if I missed one, which  I did often thanks to brain fog. They also left me in an even more zombie like state than before taking them... so decided to just drop them too. So I think applying for something like PIP will probably result in a rejection as it appears I'm "hindering" myself and not "trying to get better" or something stupid like that. I don't know.

I wonder if any of my readers who are similarly-abled, use crutches or other aids?

Need to go to bed now, I've been more exhausted from this weekend because it's been my partners birthday and we've also seen relatives, so spending most of my day in bed at the moment. *sigh*

I think it's time for an update about Annie...

Annabelle (Annie) Gisicki-Goacher was born around the 19th July 2011. We brought her home around 8 weeks after that. She was a little "blue/grey" dutch bun. We got her from Pets At Home in Leigh (UK). Andrew wanted the black and white dutch bun at first, but I was besotted with this little girl and he quickly fell in love too.

We boxed her up and brought her home, set up her new cage in our kitchen and welcomed here into our lives. We expected to have her for at LEAST 6 years. We knew that having a rabbit would bring us heartbreak after a few short years (compared to parrots - who we should have for 30+) but we didn't expect to fall so hard for her so quickly and then to have her taken from us not even 2 years later.

She was precious to us; she was so bonded to us. She used to mark our fingers with her chin. She used to bound over fiercely to give us love and play 'chase me'. She used to demand the top part of her double hutch was left open so she could 'cuddle' the side of it as she napped.  It was adorable.

After over a year, we got Annie a partner in crime. "Bigfoot" - a French Lop with a lotta attitude. He's pretty chilled and she's highly strung, so they're a great pair. Before we got Bigfoot, we got Annie neutered. We knew we had to at some point anyway as Dutch rabbits have an incredibly high chance of getting tumors on their reproductive system. (We had her spayed sometime in September 2012)

Anyway, to make what would be an incredibly long story short. She got sick on the 7th May. She was walking funny and being very skittish - very out of character for her. So I rang the vets, bundled her into her carrier and dashed her down to their practice. She was seen to within 20 minutes (felt like an absolute life time) and Iain, our vet, decided she would have to have xrays and potentially surgery as her intestines didn't sound okay. So we presumed a blockage. He said he'd keep her overnight and take her home with him after surgery so he could keep a better eye on her without having to too and from the surgery himself. We felt it was a better thing to be doing for her as we'd rather he was with her the entire time then her getting sick for the few hours he's back at home! We waited for the phonecall about her diagnostics and he told us he found nothing on the xrays and so had to do exploratory surgery. We were then told that she had fatty lumps on her reproductive system. He removed them, sent them off for surgery and told us she was dealing with the surgery well.

Next morning we had another phone call to say that although Annie was doing well from the surgery, eating 'okay', drinking etc. She had lost all sensation in her back legs. We were obviously very conflicted as to what to do, but decided to give her a shot and see how she coped with it. We brought her home later that day and it was horrible. She was unable to clean herself properly and looked messy and so unlike our bun. We had to help her pee and she wasn't pooping at this time; but eventually had to help her do that too.  She was set up in her own little 'hospital' cage and wasn't eating. After 2 days we managed to get her doing her own thing and eating some.

But only if it was warm, smushed with hot water, and off her green spoon!

She was approximately 14ml of meds per day. (Her metacam was measured "by kilo") and my partner asked me to make up a chart of meds for him!

Annie began to learn to deal with her current disability. Our suspicions were that E.Cuniculi (a worm) had been "activated" in her system after the stress of the surgery, causing paralysis. Our Vet had consulted with many others around the UK about the cause of her sudden paralysis after surgery and most agreed that this could be it.

Here she is enjoying some downtime with mummy. She was able to clean her paws and face properly when lay like this as when she was sat down, she'd keep scooting backwards by accident!

Video of her grooming herself happily on Friday 10th 2012

Unfortunately, despite all our best efforts, daily trips to the vets for check ups and shots (to get her gut moving, etc) she never made it past Saturday night. The paralysis began progressing and moved up to her lungs so she struggled breathing. We rushed her to an emergency vet's to see if we could do anything for her but we decided that it was unfair to let her suffer any longer and that we should put her to sleep. She'd been an absolute trooper through the entire ordeal and had smashed down every brick wall she was faced with up until this point. But she just couldn't this time around.

Me and Andrew were with her the entire time and cuddled our little princess as she went to sleep for the last time. We've both never been so heartbroken about losing a pet because she was our first together and my god she was something special. We could have done nothing more for our princess, our binkybum and we're so sorry we couldn't fix her.

We got the results back from the samples Iain took from Annie's surgery and it appears she'd had a bad reaction to the sutures from her spaying months before; which caused the discomfort and blockage; which in turn caused the E.cuniculi to flare.

We hate that we got her spayed for it to result in this - but as rabbits (especially dutch!) have such a high risk of developing tumors, we knew we'd have to anyway. Alongside this, rabbits (when neutered properly) should have such a low chance of developing side effects from things like sutures (rabbits have their own type!) but our girl was just that unlucky one in a million case. Our biggest mistake was not worming Bigfoot as soon as we brought him home. We had both our buns vaccinated and Annie was wormed originally; but we were so wrapped up when we got Bigfoot that we overlooked worming him and so we believed that he passed on his E.cuniculi (which can lay harmless in a bun for years) to our Annabelle.

So yes, we blame ourselves, but try not to let us eat us up. We did everything we possibly could for Annie in the time we had her, from the day we brought her home until the day she died. She had the best care, the best home, the best love and treatment she could possibly get. But this is just a reminder for all who skim over preventative health care for their buns; don't. It really can save your buns life.

We do, however, want to say a massive thank you to Vets4Pets Warrington for their outstanding care for Annie and their ability to go that extra mile every single time. Every phone call of "Just an update for you all, she pooped!" was met with cheers and delight from the staff; you really felt they were with you every single step of the way and I could not say a bad thing about their treatment of my baby girl (and my other baby boy too!)

Annie passed away on May 11th 2012.

Forever in our hearts babygirl.
xx

Stephen Fry and depression

This is a bit of a rambled post thrown together, for that I apologise.

"To me mood is the equivalent of weather. Weather is real. That’s the important thing to remember about weather. It is absolutely real. When it rains it rains. It is wet. You get wet. There is no question about it. It’s also true about weather that you can’t control it. You can’t say if I wish hard enough it won’t rain and it’s equally true that if the weather is bad one day it will get better and what I had to learn was to treat my moods like the weather. On the one hand denying that they were there and saying I can’t… I’m not really depressed. Why should I be depressed? I’ve got enough money. I’ve got a job. People like me. There is no to be depressed. That’s at stupid as saying there is no reason to have asthma or there is no reason to have the measles."

- Stephen Fry

This

I find this quote by Stephen Fry (for those who don't know, he's pretty famous, pretty nifty and also a manic depressive/has bipolar disorder) to be so SO accurate and true. I just want to scream it at people who shrug off depression and mood disorders or ANY illness that isn't "physical".

I AM SICK. I can't just stop being sick because I really really really want it to go away and I wish that people would understand that. Through what feels like most of my life I've been unwell, there was no "good reason" for me to get sick. Some circumstances may have contributed to it, but nothing set in stone... I'm just sick.

So why am I unwell? Because I am. It's just there. Nothing will make my illness go away. It will waiver and change like the weather, storms and sunny days.

I have friends and family who are depressed for "no good reason". So what? Do you need a good reason to catch a cold? No, so you don't need one to suffer with depression either. To people who know someone who is depressed for "no good reason", don't ever tell them that. Depression and so many other illnesses are soul consuming and they don't need people attacking their inability to "get over" an illness.


Rage over. Wish people would treat all psychological/invisible illnesses the same as they do with most physical illnesses... with respect and some consideration that the person is suffering and don't need more grief from you.

Apologies and an update!

I want to apologise for my absence. I took a break from writing here because I was attacked over social media about this blog by some people who I can only describe as vicious and desperate people; claiming that it was offensive and that I couldn't possibly have ME/CFS. Apparently I'm patronising and just not unwell as I can work (part time) and attend the gym.

The people that attacked me completely shattered my confidence with my illness. I believed I was really getting a good handle on my ME/CFS; joining the gym and being able to attend, volunteer, attend college once a week and work 16 hours a week... that's something I thought I should be celebrating, I was doing incredibly well. Instead of being cheered on by fellow sufferers, I was penalised and berated for the things I was doing. I was exhausted and things hurt an awful lot, but I was managing with the support of my other half. I had already quit college and volunteering because I couldn't handle doing so much at once, but since those people spoke to me I haven't attended the gym or posted about my illness. Something that some supporters have scolded me for as they believed that the gym was helping me, almost boosting my energy and happiness - even just for short bursts. Alongside this, speaking about my illness and my achievements and downfalls are so far the only "therapy" that works for me. I am uncomfortable talking to people about my illness (not in an informative way, just in a... I'm struggling to cope with it kind of way); and so I use this as my way of reaching out, informing and educating others and it's my own tool for coping.

Too Long, Didn't Read?
I was attacked for being ill but doing great; I suffered for it, but I'm back.

Although I'm back, it's not all good news. I'm struggling with my MECFS at the moment. I'm tired and more than anything my ribs are hurting. I think I've got slipping ribs, but since it's nigh on impossible for me to get into the doctors recently, I'm making do and just dealing with it. It's agonising but, hey ho...

I work odd hours, some shifts start at 6:30/6:45am and although I usually only work 3-6 hours (up to 16 hours, usually) but the place closes at 11pm. So the hours are a little unpredictable and that means I don't have a regular sleep schedule, or weekends. I get a day off, back in for a few days and then another day off. The past couple of weeks we've been given a lot of overtime (up to about 27 hours) and I've been so so proud that I've managed to do those hours without much grief from my body, but it is exhausting and it's not where I want to be in life at all.

I never wanted to work in retail, I wanted to be out there changing lives, nursing, medicine, emergency response, a caring role. OR, something in entertainment, but my confidence is squished and I never had the chance to practice theatre. I always dreamed of being on set, working awesome roles and being able to use my hefty pay package to do good. But that was just a dream. I'm worried that at 20 I'm letting life pass me by due to illness and fear of doing something.

I'm considering looking for another job, less money, further distance but more regular hours as I think that would benefit me healthwise. I could really do with some routine in my life compared to being all over the show... preferably an office job or something that involves a lot less lifting.

On a positive note, my other half had a work review today and they're happy with him and lots of good stuff came from that. I'm super proud of him, he's my rock through everything.

That's me for now anyways, I'm not working tomorrow but I could do with a decent night sleep since I got about 4 hours last night thanks to a minor breakdown about being unwell and stuck in a rut. More to come another time.

Again, sorry for the lack of updates and I hope I'm forgiven and that all you fellow sufferers are hanging on in there, don't let anyone tell you that your illness isn't hard to deal with, we all have ups and downs, different disabilities in different ways, but the important thing to remember is that our illnesses are HARD, they are exhausting and difficult to deal with. Don't let anyone belittle your achievements, if that's getting a new job, or managing to wash yourself on your own that day, it is an achievement and it is fantastic, don't let anyone tell you otherwise.

It's not about what you can't do, it's about what you can do - no matter how small it might seem to another.

Gym post #2

So, yesterday (as I posted earlier) I joined a gym.

I did light exercise, 20 minutes on 'easy' on a cross trainer. About 5 minutes doing some rowing on the rowing machine and then a couple of lengths swimming, jacuzzi time and then steam room.

I felt amazing. I expected to be a little sore today and I'm pretty happy to report that I'm only ever so slightly more sore than I usually am.

After I did a blog post, I decided to go for a walk into town to purchase some gym appropriate clothing. I found what I wanted, got some food and came home... where I promptly crawled into bed. So, although I felt really pumped and awesome, I'm certainly paying for it now. I'm exhausted and worn, but it is not going to put me off. My body hasn't been worked in a very long time and I'm determined to see this through. (I have a 6 month contract!)

Bring it on.

Officially a gym member!

Shock horror. A girl with ME/CFS has joined a gym.

It's absolute madness I know, so hear me out;

Yes, I am constantly fatigued, in pain and all the fun symptoms that you have with having MECFS. However, before (and the first few years that) I was unwell I was also incredibly... dare I say addicted? to exercise. I absolutely LOVED dancing. I even took up martial arts (had to drop it quite early on however...). I used to compete nationally in a team. I'd be dancing three days a week and then practice when I wasn't at the studio! I used to go on long walks, help muck out stables, I even (last year) took up horse riding but unfortunately money and Perrin treatment collided and I had to stop.

So anyway, I've always been an exercise nut, I enjoy the workout, the feeling you get after pumping your body. Especially if it's dancing, or with animals. Heck, if I had a dog you could count on me doing agility trials with them!

The exercises I'm doing at the gym are quite light. Least resistance, short times etc. Mainly walking exercises, such as the cross trainer. I'm also quite taken with the rowing machines and used that for the first time in a very long time yesterday!

So overall, my gym work outs are going to test me, but they're going to be incredibly 'laid back' work outs. I just feel that I need to get fitter. I can climb a set of stairs and then be out of breath and I honestly don't think it's helping my MECFS with me being so unfit! So I'm hoping I can hit just the right amount of balance for me to not kill myself at the gym, but to get fitter and improve my symptoms.

There is also a pool there which is fantastic as it helps ease the pains in my joints etc. After the pool you can also use a jacuzzi... the warmth is SO SO soothing after doing a work out... and the finally a steam room. My boyfriend said I was practically glowing after being there.

I've signed up for 6 months for a whopping £38 pcm. Eeek! So my pay slips are taking quite a bashing. But I'm thinking that it will be worth it. It also gives me and my boyfriend a chance to do something together away from the house; we struggle to find time for each other at the moment so it's nice to set a few hours aside for us to work out side by side (occasionally ignoring each other for music!). It's great so far and I love it.

I just need to invest in some real gym clothes as mine arn't really that appropriate!

Happy New Year!

Happy New Year everyone;

Feeling a mixture of positives and negatives about this year. Lots of things are going to be changing, so fingers crossed it all works out for the better.

Our housemate is moving out which is both good and bad. It's the start of a new chapter for all involved. Finally me and Andrew will have a family home to ourselves, making it as we would like. Personally I'd rather move and start afresh, as it makes me uncomfortable to be moving things into his room when he's left. But we have to make do with what we've got at the moment.

So far my new years resolution is to try and have a more positive attitude about what I CAN do instead of what I can't do. I'm tired of restricting myself and so want to try and be as non restrictive as I can in the things I do. Obviously I know I have limits, but I'm working on that.

At the moment I'm currently not doing any volunteering or my college course, so that has made my life a lot easier over the past few weeks. I still have some work to finish off however, which is stressful. I look forward to going back, but at the same time it's nice to have had a break from another stresser.

I've started doing my back stretches more and more to help increase my flexibility. It was something I was taught during my Perrin Treatment; I might not be able to do the entire treatment right now, but I'll do what I can when I can :)

The stretches involve putting your hands grasping near the back of your neck with your elbows forward. Whilst doing this you should try and turn your body, waist upwards to the left as far as you can (without hurting yourself!) and then again to the right. Do this three times then change position of where you hands are.

Next hand position is with them crossed across your chest, holding onto your own shoulders. Turn your upper body left and then right again, 3 times over. Third hand position is having them crossing your body and holding on to your sides. Repeat with the turns.

I'm also doing some shoulder rolling and shrugs. All this is to help loosen up my back which eases the pain a little. I'd recommend it as it doesn't even take 5 minutes :)

I've also invested in a Lumie Clear, which is a light treatment for spots. I've been feeling incredibly down about my appearance recently and my stresses haven't helped my spot outbreak. It cost a fair bit but I'm hoping to see progress soon. If this seems to show to work, I'll invest in a Lumie brand lightbox too. (Priorities Cat... priorities...)

Anywho, signing off for now, will post some more later :)