This little light.....

It's so easy now a days to get caught up in everything in our lives that feels overwhelming, especially when you're suffering with depression. Another example of living with something that makes you feel so very unwell but doesn't change the way you look on the outside. Whether it's a physical invisible disease or invisible mental health if we aren't careful it can leave us feeling that way. Invisible.

A constant line in my blogs. I find these really hard to do but, I do it and I do it for the next generation so that we get earlier diagnoses and better community understanding. Apart from the severe pain in my hands, arms and wrists one thing I have never found difficult is writing. There are times when I have no words to say but will sit at a laptop and they come flowing out. Like an unstoppable force my fingers hammer away and I am liberated. There have also been times this year when I have been afraid to face the laptop because I fear what will come out. So many memories from the last few years that I haven't wanted to remember. Like the look in Tony's eyes when I was taken down for emergency surgery. By the time I went down for the surgery I had had a twist in my intestine leading out to my stoma for 4 days. I was delirious and had lost the use of my arms and hands, they just cramped and shook violently but I will never forget that look. Even in the fogginess of the pain and the brain clouding (which is the only way I can describe it) I will never forget that look but I have not wanted to face it again.

When you're a young man or woman living in a very elderly body the frustration can be like a forest fire rushing its way through a national park (reference many wonderful holidays in Canada for which I count myself very blessed!)

The last few years I have been so unwell physically that I've not really let myself FEEL the emotional side of living with Elhers Danlos Syndrome and it's something that has hit me like a sledge hammer this year as I have been digging very deep to find the strength to talk about it openly in public on my blog but when did showing our struggles become a sign of weakness?

Generation upon generation we were taught by society that showing emotion was a sign a weakness and thank God every generation has made it a little easier to talk more openly about emotional and mental well being but we have to keep going and I don't believe we are all the way there yet. I do believe that the tide is turning but we cannot become complaisant, we have to strive to create a society where we can say openly and without fear of judgement "I am barely hanging on and I need help." Even better 'I'm a bit worried about myself at the minute, I've been feeling really down for a few weeks now and need someone to talk too" So we stop the decline to crisis point for people living with long term mental health issues. 

When illness and disability hit our worlds shrink around us as we become more poorly, our care is cut or we just can't face to go outside. If you have been a social person before it is easy for people to make the assumption that you still have the large circle of friends you had before you became very unwell and you get lots of visitors and loneliness is definitely not on your list of symptoms. But we all know what they say about assumptions. They only make an ass out of you and me. The often housebound person with a list of regular visitors is far more rare than you might think. I don't want to go as far as saying it is but a myth but I will say for all the people that I have met who have regular periods in their life where they are housebound none of them have regular visitors. Online communities are a great way of staying in touch and interaction on social media is a great way for the chronically ill to stay in touch with friends and family but that does not substitute regular visits.

There are a lot of great carer groups in most towns that are aimed for carer's of the elderly but there seems to be a real gap in the market for young people that require full time care. There is also a lack of support groups aimed at people living with chronic illness and disability. It's only through my online work that I have met several people in my town living with Elhers Danlos Syndrome or Hypermobility syndrome and when I have asked if they would be interested in attending a group if I set it up they have all been incredibly keen. That is a post for another day though. Sorry I have wandered from my point.

I have always been a very social person, moving in many different crowds and making many wonderful friends as I have gone along but now in all honesty I have 3 or 4 people that make regular efforts to come and see me. (Excluding my parents) If I am going through times of being totally housebound the only consistent people in my life are my parents, my husband (who also doubles as my full time carer) and my daughter (my passion, my love and my reason for rising everyday to throw on clothes even if only to give the illusion that I have been able to be active that day)

Chronic fatigue is something no one can really put into words, for centuries we have been trying to put feelings into words but you can't ever really feel something for someone else. People think when you talk about fatigue it means that you're 'just' tired all the time and that is true up to a point but it actually goes so much further then being tired all the time. It is sheer exhaustion unaffected by how many hours sleep you get. For me I actually go the other way and the worse my fatigue is the worse my insomnia becomes because for me fatigue means my arms and legs ache even beyond my 'normal' muscle pain. The worse my insomnia I the worse my mental fatigue becomes and I find myself switching off halfway through a sentence, completely forgetting what I was going to say. I also lose track of words! I know the word I want to use I just can't describe it or find it in my large vocabulary! Simple everyday words. It can be quite ridiculous! With regards to my physical fatigue I often find that I cannot be active all day whilst Amelia-Rose is at school and then be active with her in the evening. I save up my energy so that when Amelia-Rose wants to play etc I am able too. It is incredibly frustrating!! I also know that Monday an Tuesdays are not great days because I often try to join in with as much as I can over the weekend wiping myself out for the beginning of the week.


What does all this cycle of illness and isolation do to someone? Well, in my personal experience it takes away little pieces of your confidence. It seems human nature to accept responsibility for everything and oh how great we are at blaming ourselves!! Ignore the rational "They have their own busy lives" and the more loneliness eats into you the more you hear yourself say "I've done something, they don't come around anymore because they don't want to see my suffering, and of course it's my fault I am suffering because it's my body therefore my responsibility" I say no. It is NOT your fault that the moment genes met genes (ew! ew! ew! Don't make me think about that! My parents NEVER did that! Well dur! Of course they did and they probably enjoyed it as much as you do!! Hahahahaha! Sorry, just putting in a little humor! Whilst totally freaking myself out!) something within your structure wasn't quite right creating your chronic disease. This is no more your responsibility or fault then it is your fault that it rains. Do you accept responsibility for the weather? Of course not so please find a way to release yourself from the shackles of blaming yourself for your chronic illness or disability. Not easy I know. I have found writing letters to myself a really great tool in helping me be released from that burden of responsibility.

Sadly people living in the 21st century are totally overwhelmed chasing after 'perfect' and the idea of 'perfection' that we perceive to be true. I must get the washing in, the kids lunches done, tidy the house, pay that bill, change that bed, go to that group and for many people work too. The pressure of 21st living is immense but if you want to do more to give back then I urge you to contact that neighbour/friend/old friend/elderly member of your community who you know doesn't get much opportunity to leave the house and ask if they would like a visitor. If they say no the first time it doesn't mean it will always be a no so keep asking. It can take a while for some people to come out of their shell but that doesn't mean they don't want to. Admitting you're lonely is very difficult with it being tied up in a nice bow called "the fear of rejection."

I recently invited a lady I know from church who I know has been suffering with her health and experiences a lot of time alone around for a cup of tea and we had a wonderful time. In fact she was so touched that at one point in our conversation she began to well up.

I will openly admit that sometimes I can be absolutely desperate for company but one of the biggest embarrassments for me is when our house is chaotic and untidy. Not perfect. Not an Ikea showroom, I mean really, come on now.  I don't get to go round to other people's homes very often and when that happens you don't get to see that this is the reality for a lot of people! Although I know it to be true I don't think that any of us can deny that once we have witnessed something to be true it is much easier to accept. When I was well and fully able I loved cleaning and organising so suddenly living in a chaotic house does neither Tony or I any good. Don't get me wrong we aren't talking an episode of hoarders here not nearly but because I was recovering from surgery when we moved in (I hadn't even seen the upstairs when we signed our tenancy agreement) and have pretty much either been facing or recovering from surgery or in and out of hospital ever since I have never got the cupboards organised. It is difficult to find new places to put things when I haven't had the physical strength to take the things we no longer need or use out of rotation! Something I regularly did when my daughter was a toddler.

The great shame I feel about this is enormous but over the past few weeks I have been talking to myself differently (we all do it!) and driven by my deep urge for it not to be so hard to ask for help for the next generation to ask for help I took to Facebook and posted a very open honest post asking for people to come and help me organise the cupboards so on the days I do feel well enough and pain free enough to do craft, paint, whatever then I can. Little things like this really help fill the lonely hours and help you look after your mental health when your physical health is overwhelming.

In a disabled home things need to be accessible and organised. From the front door to the toilet and all that is in between and living in a home that isn't is incredible frustrating. There is a total lack of accessible housing (bungalows) in my county. All the bungalows that are on the social housing register are advertised for people over 65. This is true in many counties around the UK. Moving around needs to be easy and to be honest often it isn't so having order in storage spaces becomes even more vital. I was thrilled when various different people (some of whom I haven't seen for years simply because we fell into different social groups when our children started preschool, school etc) offered to help.

I do believe that most people are innately good, we just all get too wrapped up in our own lives which is understandable and totally forgivable. I know it can be very different in different communities which is another reason I feel so blessed that I live in such a friendly community but if you ask for help you may well be surprised by how many people will come forward because they want to help.

It's ok to ask for help, it's ok to tell people when your suffering is getting away from you and you need support. In my experience the more isolated you are the harder life gets but then you don't want to admit that life is overwhelming so you loose your voice altogether and remain silent. Breaking your silence is difficult but it's amazing how liberated you will feel because of it. 

There are billions of people on the planet and you may well say that the last thing the world needs is more noise but what if it's your voice and your voice alone that is the thing that will give another fellow human being the will and fight to hold on. What if it is your words and your words alone that can sow a seed of hope in someone who otherwise feels that their life is a hopeless life. What if it is your unique experiences that can change the way of life for hundreds of lives? You were blessed with a voice and I urge you to find the courage to use it. Even if you're not ready to share it with the world yet that's ok but talk, even if it's to your cat! Talk. Let it out, it's amazing how less chaotic thoughts become when we release them. When we can acknowledge our feelings and put them into words suddenly they can become less or more overwhelming. Don't forget overwhelming isn't just a negative words. It is also an immensely positive one. "I was so overwhelmed with the feel of injustice in the world that I knew I had to do something", "I was so overwhelmed with the feeling that I had to paint that I did it" "I was so overwhelmed with the feeling of righteous anger that I posted online posts, put leaflets through doors and spoke to anyone who would listen until...." When things overwhelm us it is often because they have become so big inside that they have to be let out.

I am unashamed to say I have done ALOT of crying recently. It's amazing that my husband's chest hair isn't as long as Rapunzel's with the amount of water it has had poured onto it recently but each of my painful tears have released a painful cry I have been holding in for far too long. I think to cope with the last few years I have turned in to a classic "Push it down" er. Before writing songs and poetry was how I processed my feelings but when you're very very unwell physically and in and out of hospital you often stop yourself feeling because you're doing all that you can to survive physically but at some point that has to come out and it is ok to cry. This is a message especially important for men to hear. It is ok to cry.

I have been trying to get out the house more lately, it's exhausting and my pain has increased greatly but I know that I have been suffering with depression this year as the 'foreverness' of my condition has finally sunk in but I do not believe that I will be depressed for the rest of my life. I still have hope. I still know I have paintings to paint, songs to write and sing, things to say, hope to share, awareness to raise. My condition has affected every part of my life but I am so blessed that I still have this wide open future ahead of me and as long as I have love in my life I know I will keep going. As long as there are other people out there suffering alone I know I will still try to fight for their lives too. If only to bring them hope.  

Next year amazingly my husband and I have been married for 10 years and I cannot wait to see what the next 10 years have in store for us. I'm not deluded, I know there will be pain, I now things are going to be hard, physically I will more then likely get worse but I also know we have the strength to face it together. I am so blessed that I have found my soul mate, my one and only, I love him with such wholeness and so deeply that I know everyday I will try to make him smile no matter how hard things get. I miss his smile when thing are hard. I miss his laugh when I see the worry in his eyes. This wonderful man who was flying in his new profession and walked away from it all because he said if someone had to care for me he wanted it to be him.

I'm working on my happy list as mentioned in the last post and it's amazing how this has ignited my creative self again. I feel like I could pop with creative vision some days and it's great to have that fire back, I am dreaming again. I don't need great physical health to be creative. A lot of creativity can be done from the confides of your own home now a days and still released out into the world via interne advertising. The internet is a great blessing for the housebound and physically challenged. I'm vlogging again and am going to try to write more on the laptop. I have always loved putting pen to paper and the 100s of years of tradition in that but writing with a pen is one of the most painful things to do with my wrists so with a little mind set change there's no reason why I can't type instead. Yes it looses some of that romantic energy but disability is about adaption so I am going to try to embrace it further not only to write my blog.

I may not know what my life's purpose is yet but that's ok. My life is about the journey not the destination.