Invisible Illness and Me

I wanted to write to you all to explain a little more about me.

I have a full time day job, I work in the mental health sector and have done for many years.  As you know, I also have my small business, making handmade jewellery and designing art cards.  I live in a lovely little flat with bearded Craig, the love of my life, and have lots of friends and a good family around me.  To many it seems I have a pretty perfect life.

In reality my life is a daily/ nightly struggle.

Now I haven’t come here for sympathy.  I have come here to tell you about this, so you understand more about me as a person, what drives me, where my business inspiration comes from.  I also want to spread the word about invisible illnesses.  It’s a bit of a hot topic at the moment and I am desperate to keep the momentum going, because it’s vital people who experience the stigma and frustration of having a disability nobody can see or understand, are seen and listened to.

I was diagnosed with Fibromyalgia about 3 years ago, after many years of being told that the pain and fatigue I suffered were due to depression.  That’s really gonna need a post or 10 of it’s own to fully explain.  In a nutshell my family GP was a locum psychiatrist and prescribed me years and years of antidepressants that didn’t work, until he ran out of things to prescribe and told me I was ‘non compliant’ with medication.  I complained about him, saw a new GP, who listened and took my pain seriously.  I got this diagnosis, Fibromyalgia (FM), finally I had an explanation as to why I had suffered for so many years.  Now, 3 years down the line, my even newer GP thinks I actually have M.E (or CFS or SEID for the really up to date people).  This is because the pain is more manageable than the fatigue I suffer, and exercise, no matter how small can put me in bed for days at a time.

I do hold down a full time job (just), and the only way I can do this is by having daily care and support from bearded Craig.  I wake up in the morning feeling more tired than when I went to be, I have no energy to bath and cannot stand up long enough to shower.  Occasionally bearded Craig will help me to bath.  I cannot wash my own hair as the pain and fatigue in my arms makes me feel nauseous.  I rely on facial wipes and sponge baths at my bathroom sink.  Dressing is exhausting.  I always apply make up before leaving the house for work, I couldn’t bear to let people see me looking as ‘dead’ as I do when I wake up.  I rely on bearded Craig to make me tea and breakfast, if I am feeling well enough to eat.  I am driven to work, I cannot sit on a bus comfortably anymore, sitting upright in a chair can be excruciatingly painful and I cannot stand still for more than a minute or two.  I do not drive.  I have such horrendous mental fog, memory and concentration, I have never been able to pass a driving test and even if I had, I am not sure I’d be safe on the roads!  I have lots of coping mechanisms to get through the day at work.  I am lucky in that I can manage my own diary and workload.  It’s mega difficult to get through a day, sometimes I need to travel quite a bit and this is exhausting, lots of taxis and trains (luckily with trains I can usually find a comfortable way to sit, but have been know to sit in the aisle on the floor to be comfy).

What keeps me going is my love of my work, I support people who have mental health problems, I adore doing this, I thrive on helping others.  It gives me such a sense of achievement, and that helps to keep me well in my mind, if not my body.  I have been hell bent on continuing to work full time for a long time.  It’s only been recently that I have started to consider alternatives, because I know my body is rebelling against me and dedicating myself to my work, is horrendously impacting on my ability to live a fulfilling, happy, social life.

When I return home from work, I am drained.  I do very little, and try to maximise on rest for the next day.  Sometimes I go straight to bed for the next day.  Beareded Craig?  He cares for me, he cooks for me, he brings me tea, he wipes my tears away.  God I love that man.

Last week I did something pretty extreme, and went, on Wednesday night to an amateur theatre group.  My friend invited me, and I decided I needed to do something other than sleep and work.  So I went along.  I enjoyed myself, I met people, and I acted, something I haven’t done for a very long time.  I used to do a lot of drama, and I love to sing, I fronted a rock covers band for a long time, before illness took it away from me.  I loved the group and the people were lovely.  I wont lie, it was a struggle, and I yawned my way through it and the next day at work was pure hell, but I am going back, and doing a 2 night show in May.  I think I am gonna book a few days of work after so I can recuperate from it.  I have decided to start putting my social life higher up on my priorities scale.

Part of the reason I am trying to focus on growing my small business is so if I can’t work anymore, I will have something meaningful to do that will pay my bills, keep a roof over my head, and enable me to live my life comfortably and happily.  I see so many people suffering from illness, in these times when our economy and government do not help us.  I don’t want to be victim to the welfare state, I want to thrive despite my illness and I want to help others to do the same.  I believe that my life is in my hands, and it’s up to me to overcome my own battles.

I also desperately want to be a source of support and encouragement to people like me.  People who’s illnesses are not visible.  I am developing a range of cards and charms to gift to people who have these struggles, to let them know they are not alone, that despite their illness not being visible, you know what they are going through, you remember, and you are with them, supporting them to get through each day.

I am the woman in her mid 30’s, wearing a suit on the train, make-up done perfectly, little trolley case on wheels, looking like all the other professional commuters, desperately needing that last seat.  But there’s a teenage boy sitting in that seat now, and he’s playing music loud on his ipod, tapping his foot in the aisle.  Do I tap him on the shoulder?  Ask him if he minds if I sit down? Because I am disabled?

And before you think he is the one that should give up his seat.  Do you know him?  Do you know what he is suffering from?  Why he might need that seat more than me?   Maybe he has the same illness I do.

With love from Lis xx

Where did all this extra love come from?

Baby Luke

I always felt I had a lot of love inside me.  Looking at my past, relationships, friendships, I always gave love freely and I still do.  The thing is, I believed that there was a limit, a ‘love limit’ – like I was full of this wonderful, happy, fluffy stuff, that I could share about; the concept that could grow more inside me, never entered my head.

It was only recently that this concept off ‘growing my own’ and accepting more love really came to me as a concept for building on inner happiness and success.  I am so glad it did and I want to share this with everyone.

The baby in the photo is my Nephew, Luke.  He is a beautiful little soul.  We first met when he was 4 hours old.  What surprised me was the way he was looking around, looking at me.  I actually had it in my head babies who had just been born were pretty blind, but I don’t have children and I wasn’t very clued up on newborns, so I had a google.  It seems that they can see things and are studying everything, from their surroundings to faces from birth to around 8 weeks when they start to mimic facial expressions – MAGICAL.

Little Luke and I have spent some time looking at each other and I LOVE HIM TRAZILLIONS.  I didn’t know the love I had inside my heart could get any bigger and he just went and doubled it.

When I met my boyfriend Craig, 3 years ago,  I immediately wanted to share with him every little last bit of the love I had inside me, it really was love at first sight.  I didn’t believe in that before I met Craig, I thought it was something big idiots said, not me… Although sometimes I am a big idiot… Anyway, I realise now, that he in turn gave me his love too, and we are thriving, exchanging love daily and the more I give and get the more I seem to have capacity for.  If only this concept worked for burritos and cheescakes.

See, over the last few years my love zone was working well, and I never felt someone else could come along and give me more love.  Little Luke changed that the moment he arrived last November.  He came along, and immediately shared his love with me, I know he did because I can feel it and see it in his little chubby baby face.  I am now full to the brim and I want more.  I know I can have more.

So how do you grow love? Here’s a few steps:

1/ DESERVE LOVE

I spent over a decade being treated pretty badly in relationships, meeting the wrong guys, some pretty abusive; for a long time I believed that I was just ‘unlucky in love’.  It turns out my self esteem was pretty low the whole time, I had mental health problems in my teems and 20’s, and really believe my feelings of low self worth, led me unintentionally straight to the wrong men, and not just men, but friends too, lets not forget that love is about sharing with a whole manner of people who come into your life and all relationships are important.  So take time to work on loving yourself.  It’s a cliche, but a cliche for a reason, it’s true.  There is so much help out there and I am happy to chat to you online if you need some more pointers. I will be covering this more in the love blog.  The main thing is to know that you are important and you deserve to be treated respectfully and with care and kindness at all times (yes, even you).  Don’t waste time being around people who make you sad, anxious, frightened, or those who are taking your love and not giving it back to you leaving your heart all empty.

2/ BANISH NEGATIVITY

Ok… It is not normal to argue in relationships, it does not make relationships exciting, and it is not part of life.  Arguing, rowing, fighting, just creates negative vibes that none of us need.  Most of us grew up believing that it’s ‘normal’ to do this and yes it is normal… BUT… Do you need it? Do you enjoy it? Does it make you happy? Does it make you feel good inside? Does it solve anything? (Ok sometimes, very occasionally arguing does solve problems, but I believe there is a better way, where we do not need to go through that trauma – this is where communication skills come in brilliantly).  Negativity breeds negativity and it’s toxic.

3/ GIVE LOVE

Share love at every opportunity.  Every human being is capable of love, (some find it near on impossible, but they have the capacity and they might not know how – don’t forget this).  Take time during the day to share the love – this might be telling a friend of family member you love them, it might be buying a cup of tea for a homeless person, it could be as small as smiling at the sad looking person on the bus, or saying ‘have a nice evening’ to the lady who works in the corner shop. There are countless ways to share the love, TRAZILLION WAYS.  The more you give, the more you will get, it’s a simple as that.  Remember love can be as big as the birth of your child, and as small as patting a dog on a walk in the park, what’s important is, it’s all love!

4/ ACCEPT LOVE

I am the queen on dissing people who compliment me and I am currently making a conscious effort to accept love from people.  The other day I did a presentation at work, immediately after I was talking to a colleague and I said ‘I think I did a pretty terrible job of that’… Then gave myself a big mental slap.  My colleague told me I did a good job, and I said ‘thanks that means a lot’, with a smile.  It was HARD for me to do this and I think a lot of us are good as dissing ourselves down and focusing on our shortcomings.  If people are being nice to you, giving you kindness, please take it, even if it feels hard.  You really are worth that, and they in turn deserve your thanks, because they made the effort to praise you.  Sharing this loop of positivity will enable both participants to receive and access more love and love is the greatest thing in the world isn’t it?!

I’m going to blog on all 4 of these points so please keep an eye out for more!

With love

Lis xx

Welcome to The Be Kind Times

Welcome to The Be Kind Times 🙂 My name is Lis (or Entwined Lis if you are familiar with my handmade jewellery venture over at entwinedbylis.co.uk.

I am super happy to have you here and I want to share with you, the reason for this venture.

Ok, so we sell cards and small gifts, why? Because I just love to design and create, and if I can’t do that I get my grumpy face on and stomp and the bearded Craig gets a whole load of hassle he don’t want ‘up in his grill’ as he puts it. You will find out more about bearded Craig, he’s my better half, my inspiration, my chef when I’m sleepy, the rubber of my feet. He’s a big bearded gem.

If I was to keep crafting, designing, making, our little Ramsgate flat would be overflowing with stuff… lots and lots of stuff, my bank balance would be empty and my house full of gemstones and paper and bits of metal; actually that sounds ok, but bearded Craig needs zen and I need the funds to keep us in cookies, so I sell my wares and that’s why I set up entwinedbylis to sell my handmade crafts.

The only problem with this is, it’s not making me happy, like truly happy inside my soul, and I felt I needed to do more, to make a little change in the world, and not just sort out my credit card bill and this weeks groceries, but to make a change in the world, to do something inspirational for my fellow humans, and for my inner peace too. I was becoming increasingly anxious and saddened by the amount of hatred, crime, sadness, abuse, that is being so widely covered in the news and on social media; it seems that these days there is no end to the heartache and no escape from it. I began to feel a strong desire to do something tangible to share some kindness in the world. It’s my little battle against the darkness of war, prejudice, depression and all the other things that just stop a flow of positive energy.

Through my own research, actively seeking out the happiness spreaders on social media, namely Twitter, I love twitter for this, I found countless people who are also hell bent on making the world a happier place. You may be reading this exactly for that reason, I actively found you because you are the person I need to be part of my love posse.

How do you spread happiness, kindness and love? That’s a big question, so many possibilities, and the only way I can answer that is by doing what I love and sharing it with others so that they can pass the love on. I will achieve this in the form of greetings cards and small charms, that can be given to a loved one, someone who might be going through a hard time, a crisis, or to celebrate their achievements, no matter how small.

I want to expand on the bog standard card shop criteria. My cards are not just for birthdays, anniversaries, special days, but include messages for people who are being bullied, are having struggles at work, suffering from mental health conditions (because nobody gives a ‘get well soon’ card to someone who just got diagnosed with psychosis and they deserve to know you hope they get better too).

I am going to do another post on kindness and mental health, my background is in mental health support and recovery coaching and it’s super important to me. It deserves a post or two of its own.

I can’t wait to catch up with you again soon. Please drop me a line, I would love to chat to you, get your feedback and do a bit of kindness spreading with you 🙂

I will leave you with a little insight into my business, and the inner workings of my romantic mind…..

Love Lis xx

A love greater than breaded fish