How does it feel

So many people ask me questions about Alfies skin and ask me things like ‘how does it feel’ and ‘will this hurt him’ or say things like ‘that must be sore’ or ‘that must be painful for him’.  Honestly, as a parent who does not have ichthyosis, it is impossible for me to really answer accurately because there is no way of me knowing for sure. 

I can never really know how Alfies skin feels on a day to day basis.  He can tell us when he is sore or itchy or when he has a blister but he can’t communicate how his skin feels on a ‘normal’ skin day because he doesn’t know any different, it is Alfies ‘normal’.  Describing how you feel daily is a funny thing; having a long term medical condition myself I kind of get it because I can’t really remember not feeling like I do now.  And again, like Alfie, I can say when I am in pain or when I feel more uncomfortable than normal but on those normal days when I know I don’t quite feel ‘right’ but I can’t explain exactly what that feels like.

But I like to think that I am pretty in tune with Alfie and I can read him pretty well by now.  Alfie is very brave and even when we know he is sore, he will never say that he is because he doesn’t want to stop what he is doing.  Sometimes as parents we have to stop him from playing so that we can deal with a blister or sore skin and we have to make that decision for him to stop him from being in any more pain afterwards.  Alfie would keep going despite anything that ichthyosis throws at him.

What I do know about Alfies ichthyosis is that yes, it is sometimes very sore, it is itchy and it does hurt.  It doesn’t always hurt and it isn’t always itchy but we can recognise when Alfie starts to feel that way and he is also able to verbalise it more now he is a little bit older.  Alfie will sometimes cry because he is sore or his skin feels stiff and that is when we know he is in a lot of pain because most of the time he gets on with things without complaint.

I have been asked a few times about handling Alfie, physically.  Sometimes people are scared to touch him or scared that they will hurt him.  And I can understand that because when Alfie was born I was scared about those things too.  My response is always that you just handle Alfie in the same way you would any other child but you bear in mind that he does have fragile skin and may be sore sometimes. Obviously we wouldn’t want you to be throwing him around and being particularly rough with him but equally we do not need to wrap him up in cotton wool.  You can usually tell by the way Alfie is walking or carrying himself that he is sore so you would then adjust how you picked him up for example.  Sometimes Alfie has a blister or a sore patch of skin that we don’t know about and he will say so if we pick him up and it hurts him.

When I think about how Alfie feels now when he gets a blister or a rubbed area of skin and he tells us that it is really sore and that it needs a dressing on I always get a little voice in my head saying ‘imagine how he felt as a baby’.  Thankfully Alfies blisters and peeling skin are less frequent as is the nature of his type of ichthyosis but thinking back to when he was a baby makes me feel quite awful because he must have been so sore all of the time but there wasn’t really anything I could do to take that pain away.

I always describe Alfie as hard as nails.  It is not nice to think about but Alfie has been through quite a bit of pain in his short life and as a result, can cope with quite a lot before it registers.  For example, Alfie can fall over and take a load of skin off; many other children would be in floods of tears but a lot of the time we don’t even know Alfie has damaged his skin.   We would never know that Alfie was getting another tooth because he never cried, never woke in the night because of teething.  The only way we would know Alfie was getting a tooth is because his skin would go very dry on his back right before a tooth popped through!  Alfie will rarely cry when we burst blisters and he will lie still if I have to remove a hair or something that has got stuck under his skin (if a pet hair or some fluff gets on Alfie, his skin will grow over the top of it very fast and we have to get it out with a sterile needle or he gets an infection.)  He never complains of feeling poorly even when he is. 

Alfie has only ever really complained about his skin once and that was very recently.  His skin had been fine when I had bathed him in the morning but by lunchtime a particularly big blister had just appeared on the top of his foot.  Unfortunately it was a physio day and we had to go out but I could tell that it was really painful for Alfie to walk so I let him sit on the pushchair with Rene.  When we got home he really was in pain and he sat with me on the sofa (which he NEVER does) so I knew something was really wrong.  Alfies foot was so sore that he couldn’t even walk with bare feet, he was crying despite our usual pain relief.   Alfie had previously been referred to wheelchair services and I wasn’t sure that it was necessary but seeing him unable to walk that day just made me think about the future and how he would cope with walking when he didn’t have Renes pushchair to sit on or if he was on a school trip.  We have since been to wheelchair services and they have approved him for a chair to use when he needs to.  I don’t want Alfie to be singled out for anything else but on the other hand, I would like him to be able to join in things even if his skin tries to get in the way.  Hopefully having the chair will mean that even on the (thankfully) rare days that his skin is as sore as that, he will still be able to do what he would normally be doing and not have to miss out.

I may not know exactly how Alfies skin feels but I can show empathy towards him.  I can try to put myself in his position and I know that like Alfie, I would not let my skin get the better of me but I would learn to listen to my body and give it a break when it needs it. As Alfie gets older I hope that he will be able to tell us more about how he feels and we can learn a little more from him.  Alfie has taught us the very meaning of being brave and being a strong individual; he is our super hero.