“The list”

Perhaps like me you’re one of those unlucky people, who when you go to see a new healthcare professional or sometimes even a beautician, or you’re just filling out a form for something, where you’re not expecting it, you have to recite the dreaded list. 

‘Do you have any health conditions?’

“NOOO IM GONNA GET DRY MOUTH! Seriously is this not on the system!? Do you need to know?”

I find most people switch off about half way through my list. But the thing is, it’s not just a list, it’s my life! I deal with this crap every day, so you might be getting frustrated by having to write down or read through my list but imagine living with all of the things on the list!!

So perhaps lovely readers you might be so brave and lovely as to bear with me and read my list and then comment with yours and I will read yours. We can appreciate eachothers struggles but we can’t know how it feels. And this is one time when we are writing the list just for ourselves and we are accepting that our lives are hard but we are owning it and we are awesome and that list is part of us 🙂 much love…here goes!

• Hashimotos disease
• Migraine (including hemiplegic migraine)
• Pernicious anemia 
• Depression and anxiety
• Endometriosis
• Vulvodynia (& vestibulodynia)
• Essential tremor
• Fibromyalgia (recently diagnosed)
• Irritable bowel syndrome
• Hypermobility syndrome
• Acid reflux disease
• Eczema 
• Piles 😳
• Bruxism (Grindy teeth, locking jaw!)
• Costochondritis

That’ll do!

I do feel good listing it and I actually don’t feel embarrassed, none of it is my fault and I feel I’ve been given a poo-y stick sometimes but I have a lot of great things too in my life and we are all allowed moments of self pity as long as they are brief and you get back up. Managing your life around how you feel daily is important and accepting that you mustn’t compare yourself to anyone else is key. If you want to join in please leave your list for me to read 🙂 

Wellness Wednesdays 2

When I feel low, lonely, frustrated, sad or any of the other bad feelings that tend to invade my mind daily, one of the most important and easy tools that I find helpful is a pen and paper.

Whether its writing an imaginary letter to a doctor who’s pissed me off, making a list of fun tasks to complete or writing a poem, if talking to someone isn’t an option, then talking to my notebook really does help. Getting your feelings out, not thinking and just writing and writing until you cant write anymore you can empty your mind of the negativities even if just in the short term.

Sometimes I find that making lists can help me to refocus my mind in a positive way. The other day I wrote a list of things that I would like to have a go at. This isn’t the kind of list where I will punish myself if I don’t achieve everything I’ve written, but more of a starting point for when my thoughts are taking over and I need to be doing something else! Of course achievement also adds more positivity to your life too. This also helps me when I’m in a slump and finding it hard to start the day, wanting to just hide away. If I write little notes to myself and put them on the wall next to my bed, I’m more likely to make an effort. Some examples of my notes are:

‘I know you don’t want to, but you will feel better if you get up, have a shower and get dressed’.

‘I know you get anxious about work but you always feel much happier and like you’ve achieved something when you do it.’

‘Get the housework done today and then you can put your feet up and watch crap on the telly.’

Writing a letter to yourself in times of despair can also be of comfort. I have written angry misery filled short novels to myself before, letting out my frustrations and being brutally honest. Whilst this is a helpful exercise, for more wellness in your life, I’d recommend the opposite. Write yourself a love letter. It doesn’t have to be soppy or full of things that you don’t feel like you really mean. If you can’t bring yourself to find good things about you, then simply list all the positive things around you in your life. When you read it back you might just feel a warmth inside and hopefully see that these positive things would not be in your life if you weren’t an amazing person who deserved them. It’s easy to focus on the negatives in your life but they wouldn’t feel so bad if you didn’t have lots of positives to contrast them with.

A lot of the time, keeping your mind and body feeling well is about reinforcing any and all positives that you can find around you, keeping yourself motivated and a lot of the time keeping yourself distracted and not thinking too deeply. Keep that notebook nearby! It is the cheapest and best therapist you will ever have! Be honest, open and imagine that you are a motivational speaker for yourself.

Happy Scribbling!!

Growth…

Firstly apologies for the lack of Wellness Wednesday this week- I was battling a Monster of a Migraine so was shut in the dark! Hope you are all well!

Today the word on my mind is Growth.

To grow can mean many things. I have grown my hair (and cut it) many times. I have grown up, learning and advancing as a person. I have grown apart from people as our lives have taken different paths. I have also grown bitter from illness.

I feel that my growth in life has been somewhat stunted by ill health. I’ve watched my best friends grow up into the sky above me, leaving me behind in the weeds unable to reach the sunlight. Whilst my friends moved away to University, my limitations meant that I could only attend a nearby part time course which left a lot to be desired.

Whilst I have forged a great life for myself in my hometown, with my gorgeous husband and lovely house, I cannot help but wonder how different life might have been if my body had grown up differently. What things have I ,and am I still, missing out on in the world of a twenty something…

Dancing. Shaking my thang in high heels for hours, and just feeling a little tired the next day.

The reality. After about 20mins in a club I’ll either faint or have to leave before I do.

Drinking. Sipping down girly cocktails, or doing shots with my mates all part of the typical girls night out.

The Reality. I can’t drink. My body is too weakened already and drinking leads to extreme dizziness even from the tiniest amount.

Travelling. Hopping on the train to visit friends or Backpacking across the world!

The Reality. I cannot travel alone on the train incase I have an episode and collapse let alone travel over the world!

I wont go on and on with a huge list, but my point is that invisible illnesses are damaging not just to your body, your self esteem and your outlook on life, but your friendships and freedoms too.

When you are fit and healthy the amount of things you have to think about in any one day are relatively small. You may have a taxing job, a stressful relationship or any number of other life issues, but deciding whether or not to clean the kitchen or walk the dog because you don’t have energy for both isn’t one of them!

People say that illness shouldn’t hold you back, and whilst I agree with this in terms of dreams and long term goals, you do have to hold yourself back and have limits in order to live a life that has as many achievements as possible. Knowing what you are well enough to achieve each day and limiting yourself accordingly is part and parcel of having a chronic disease.

Whilst I have had to adjust to this, it isn’t easy on the people around me. After all if you had tickets to a gig and could chose between taking your fun easygoing friend or taking your awkward friend who would need pit stops and somewhere to sit down regularly…who would you choose? I love my friends and I know they care deeply about me, but its no surprise to me when I see photos of them out with their other friends all the time instead of me. It hurts and I get super jealous, but they cant always be expected to have to work with my limitations just because I have to.

Even family can’t be expected to understand the little changes to daily life that you have to make. I always feel that I’m being judged as lazy or miserable when I get a call from my Mum asking how many clients I’ve seen this week and I haven’t managed very many. I can get over my own disappointment in myself but when you hear that disappointment in the voices of people you love and want to approve of you, it is really hard!

Its very difficult not to sound self pitying when writing about limitations. I do have moments when I have a cry and let myself grieve my lack of freedoms, but I also do feel proud of myself for having learnt my limitations and being able to say no when I feel I might be over doing things. We all create our own sense of what is normal. I will always try harder and grow myself further in as many aspects of life as possible. But unfortunately some obstacles are immoveable and you just have to learn to take a different course around them.

The most important thing as always is to listen to your body, set goals, and be realistic. You know yourself better than anyone else and if you need to rest just bloody well do it!! Sod the nay sayers, I know you’re not just being lazy!!!

Hormones- good or bad??

 

Anyone who knows me, knows that I have never ever wanted to have kids. The thought of having something growing inside me, moving around- the whole pregnant thing really! And then after that, the sleepless nights and the fact that your whole life is taken over forever! There are countless reasons that it has never appealed and whilst I still find the whole idea totally bizarre, lately some of my feelings on the subject have changed. Perhaps it’s since getting married or my age but there’s something that keeps dragging my thoughts back to the idea of having a child. Would it be a boy or a girl? What name would we give it? what clothes would I dress it in? What attributes of mine and my husbands might it have? Where I used to have only negative ideas about having a child, I now seem to have some positives, with only one main concern in my mind. As somebody with a lot of health issues I worry about how pregnancy would affect both me and a potential child who I could pass all my afflictions on to. Having Endometriosis and Hashimoto’s Disease, there is also a strong chance that I am unable to conceive, or that if I did, I might lose the baby. But still I keep wondering why my mind seems to have become so much more drawn to the whole idea of the thing. Has age mellowed me?

I’ve come to the conclusion that this is simply the way we as women are made. We are programmed to come to a point in life where our hormones take charge and override all our sensible ideas with this primal urge. I’ve always admired women who never had children for their drive and strength of mind not to give in to peer pressure and assume the role of mother that we are all expected to. But now I can’t help but think that these women must also have felt this insane desire at some point but had no opportunity to make it reality. This is a really sad thought…but I also don’t think that out hormones should govern us.

Every month when I’m sad and crying for no good reason I wonder why our bodies do this to us. But hormones are a part of us, especially as women. Should we accept that they are a part of our being and therefore part of our persona? Or should we not allow them to make huge life decisions on our behalf? You have probably at some stage altered your life because of some unexplainable urge or craving, but do you accept your hormones as a part of who you are or does it piss you off that they can take you from one place to another so unexplainably without even asking your permission? I’m undecided. I know that as a woman I’m capable of many many things, but is my one true purpose simply to continue the race? And what then if you aren’t capable of bearing a child, does that mean that you are not a true woman?

It’s this kind of thinking (and probably my hormones!) that make me really ponder the meaning of life…as well as really confusing me!

What is this blog about?

Before I begin any lengthy self indulgent posts to a possible audience of none, I’d like anyone listening to know what this blog is for and who I am.  I am 24, recently married and a working musician/artist. Life is pretty great! However, since I was 16 I’ve been diagnosed with 2 autoimmune diseases, several pain conditions and a number of other health conditions. I don’t need sympathy, but I think its important to share my experiences and try to reach others going through similar things. By sharing my ways of coping, my successes, down days and just my own random thoughts feelings and stories, I hope you will do the same. And maybe some of these issues will be a little bit more understood. Never feel embarrassed to talk…after all, a problem shared is a problem solved. Or at least a weight off the mind.