Baby steps

So today is the day that I should have been travelling with my two friends to Marlborough for the day before heading to the travel lodge and then going on to Bath tomorrow. On Sunday it became clear that I wasn't going to be able to go and to say I'm a disappointed is a bit of an understatement. I have been looking forward to this day since the spring.

Yesterday was a really hard day. I didn't get much sleep Sunday night and the disappointment of not being well enough to travel triggered the enormity on this fact... I am disabled.

Disabled.

I am disabled.

Disabled noun (plural disabilities)

• 1a physical or mental condition that limits a person’s movements, senses, or activities:children with severe physical disabilities [mass noun]:differing types of disability

• 2a disadvantage or handicap, especially one imposed or recognized by the law:the plaintiff was under a disability

I have been so adamant that this isn't going to define me I have tried to ignore it altogether.

To put things into perspective until the 29th August we thought I was going to get better and return to not only full mobility but also an active and pain free life. Yesterday on the 30th September I fell apart. Today I am assessing the damage and I hope tomorrow I will start picking up the pieces. In the past 4 weeks I have cautiously dipped my toe in the pool of emotion brought on by this reality but it wasn't until I woke up yesterday that I fully submerged myself in it. It was as if I have been balanced on the edge of the pool and yesterday I lost my footing and fell in. I honestly thought I had 'felt' about this but nothing... nothing compares to what happened yesterday.

I wanted to reach out for help but desired to be alone. I shed perhaps a thousand tears. The front I hide behind was dismantled and there exposed lay the reality that for the rest of my life I will manage a chronic illness.

Getting in the car for two hours and going shopping with my girlfriends is never going to be easy. I am not saying it won't happen, because I know me and I know when I get my fight back I will move heaven and earth to have the life I desire but it will always need careful planning and that is what made me sad yesterday. I say sad. I mean devastated.

All of these terms that I am sure will one day become positives are at the moment huge and daunting. 'Managing' 'Preparing' 'Planning' this is how we will need to live our lives from now. I am not saying my life is over because it isn't. It is just never going to be the same again and right now that feels too big.

I have spent my adult life wishing the best for all the people around me I never considered that it might be my life that was hit by this world moving event.

I have been stood in a desert, the dusty cracked ground beneath my feet, the blistering sun beating on my back and yesterday the rain came. It was a rain storm that for a while I thought would actually drown me and sweep me away but today I can see that hopefully it was a storm sufficient enough to nurture everything around it without doing too much permanent damage.

If I could just get my pain under control. If I could just build up my core muscles to support my body and make me more stable. If I could just get a good nights sleep. If I could build a relationship with the local occupational therapists again. If I could allow myself the time and money to go get regular massages or sound baths. If...if...if. I have been living on ifs and what yesterday made me realise is that unless I turn these 'ifs' into 'whens' I am never going to have the resources to manage this consistently.

I need to start accepting that like it or not this is a part of me and I must stop putting so much energy into proving to myself how much I can do in spite of it and ultimately burning myself out. If I can start working on that true acceptance then all the ifs will turn into whens because I will start to do the things I need to do to empower myself to move forward.

I need to accept that for a while there is going to a be huge mountain of emotion for me to walk over and I need to quit trying to go around the mountain. I have to go over the top. It's ok for this to hurt me. It's ok for me to need the extra support I do from my husband, family and friends. The people who pause for just a second to think how enormous this is and acknowledge it and want to be there for us right now accepting nothing in return, these are the people who I think will be in our lives forever. They will forever have a place in our heart and we will be eternally thankful for them. The ones who think this is all just nothing and it's high time for me to get over. They are not people who will be walking down the road with us in 10 years time.

So life may never be completely carefree and to achieve the sense of being carefree will take a lot of productive pain management and resources. I may always be the mum in the wheelchair or on the mobility scooter but no one will ever love my child more then I do and that will make up for everything I can't do. It will make everything I can do even more precious because only I will ever truly know how much effort I am putting in to maintain a level of normality.

I am starting new medication today that I am told will have some nasty side effects for about 2 weeks but could be the start of kicking this Hypermobility Syndromes butt. There are two goals with this medication. 1. To get me the sleep my body needs to compensate for having to work so much harder then a 'normal' body and help me emotionally deal with being in pain all the time (it is exhausting) and 2. Hopefully over time it will turn my bodies response to pain down a bit and help it respond in a more natural and proportionate way.

It will take a while for the medication to work properly so until then I shall carry on. One foot in front of the other. Baby steps for now.



 http://www.youtube.com/watch?v=IqF8qR3N-Og