Lean on me

We are bloody luckily that we have a lot of support from family and friends and we have a lot of amazing people in our life.  But (and don’t take this the wrong way guys) sometimes that’s not enough and you need support from people that actually ‘know’.  Not belittling the emotional/physical support we have had from family and friends in any way and we are so grateful for every listening ear, shoulder to cry on, freezer filling, cake baking, pedicuring one of you; we needed extra support though from people that knew exactly what we were going through – other families, other people with ichthyosis.  We needed information that we could only get from people that live with this day in day out.

Thank goodness we live in an age of social media and the internet!  The EB team put us in touch with the Ichthyosis Support Group and we also found a number of support groups via Facebook.  All of a sudden we were in touch with families who could offer actual advice especially on the day to day stuff like ‘what washing machine is the best one to clean the greasy clothes’, ‘what cream do you use for this that and the other’, ‘how do you COPE’ and also ‘how the hell do you get 50:50 ointment off your cloths/sofa/walls/cats fur’!

When you google a condition, especially one you have never heard of, it’s not always a good idea.  You can read stuff and you can look at pictures but you actually don’t know if what you are looking at is real.  My advice is don’t google, go and seek the answers from actual people or you’ll just end up scaring yourself and worrying about stuff that hasn’t even happened (true story).

I am going to write a little bit more specifically about the fantastic Ichthyosis Support Group (ISG) in another post because they deserve one just for themselves and I think they are very special!!

In those early days I got in contact with people via facebook and the Friends of Ichthyosis group.  I’m not going to mention specific names here because there are so many people that have offered advice, answered my questions (and I had A LOT) and supported us as a family, I wouldn’t want to miss anyone out, you know who you are don’t you?!  Support has come from all over the world and if ichthyosis has done one positive thing for us, it would be that we have made some new friends who we share a special bond with.  I’ve met (online and in person) some wonderful people through ichthyosis, I wouldn’t have met them otherwise.  We have gained a lot of useful information, we have been supported through some tough times, we have had questions answered and fears put to bed.  I am grateful to every single member of my ichthyosis family for just being there.

We are now almost 4 years in to our journey with ichthyosis and by no means do we know everything there is to know but we have gained a wealth of knowledge and experience in this short time.  I now feel able to offer advice and support to others in the community and to pay it forward. I have been put in touch with new mums looking for help and I have made even more new friends because of this.  

Ichthyosis has sent us so far out of our comfort zone and we felt like we were in the dark a lot of the time.  We are lucky and when we started out on that dark path we found a group of other people just waiting there for us with torches to help us see where the hell we were going.  Four years in and we have a torch of our own!