Why my week has sucked weasles

September 24, 2009

I love that, sucked weasles, it is what we used to say at work if we were having a bad day. Those of you that follow me on twitter may have realised that I have been having a bad week. I have tried to keep my upset, anger and frustration to a minimum but when I am here all day alone it is good to have an outlet.

I have written on this blog before about the condition that I have. It is called Hidradenitis suppuritiva. Unfortunately it is one of those things that there is no cure for. I have had countless operations, courses of antibiotoics, seen specialists, consultants and a homeopath yet here I am again.

I had hoped that I would get some relief when pregnant as it has always seemed linked to my hormones in some way. It usually flares up every month but when I was pregnant I did have some relief, although I can remember two main occasions where I had it badly, and I wrote this post about it. At that time I had a lesion on my bottom which made sitting, walking or lying down very uncomfortable. This week I have had a massive leison at the top of my leg where it meets my groin (where my knicker elastic would be). I am unable to walk, wear anything other than a skirt or a nightie, I could not bend the leg so getting up and down stairs was agony and bending impossible unless I stuck my left leg out behind me (like a dodgy ballet dancer). Sitting was agony.

You can imagine what looking after a 7 week old baby is like when you cannot do these things. I cannot put him on his play mat or in his chair. I can manage his cot as it is not too low. Luckily I have a changing table where he is a chest height so that is not to bad. He likes to be jiggled about and rocked to sleep but this means walking which was hard. Getting down into the chair to feed him was so hard I was biting on a muslin to stop me crying out. In the end we have camped out in the bedroom for the past two days with his bottles and a flask for warming them and he has laid on the bed or watched his mobile in his cot to amuse himself. Not so bad now when he is so small but what about when he is older?

If I stop to consider all of this I feel like I am paralysed. This flare up has coincided with my periods returning after having a baby so the chances are that this will happen every month. How will we manage to look after Piran? When I am phsically unable to do something for him I feel like such a failure. Was I selfish to have a baby? I thought about it a bit but we didn’t factor it into our decison making. What about when he is mobile? How will I run and catch him, how will I stop him if he does something dangerous? I haven’t been able to take him for a walk this week, and I usually try and make sure he gets out every day. His Nan has taken him for me but I am his mother, it is my job.

Everyone that says you get delivered a truck load of guilt along with your baby was right, I am constantly second guessing my own decisions, I spend hours deliberating about what I am going to do about going back to work (and I am not even due back until next June!) and worrying that I am not doing the best for my child. Now I have thoughts of how will we cope if this gets worse, what happens if it is hereditary (not proven, but my brother has the same thing, although no one else in my family does) and how can I even consider a second child if I am not capable of looking after the first?

I have a responsibility to this little man who is lying fast asleep on the bed next to me right now. I have to banish my fears and deal with each day as it comes. Today I feel physically a bit better, so my mental state is a bit better too. I have to stay positive and take positive action. I am going to spend some time doing some research into things I can do to help myself and I am going to go back to the doctor and get another referral to see someone about this. I do not want an operation again but perhaps it is time to try antibiotics again or maybe there is even something new, after all it is over a year since I saw anyone about this.

6 Comments

  • Reply Who's the Mummy September 24, 2009 at 9:43 am

    You know, when I lived in Brighton I used to see the artist Alison Lapper from time to time (well, mostly in the cafe at M&S, where I was eating cake).

    She has no arms and shortened legs, but her little boy was beautifully behaved – I read an interview with Alison once where she said something like being disabled meant her son was more sensitive and he really understood things like he couldn't run into the road when getting into the car.

    I know it's not the same thing exactly, but I do think children understand when parents have physical limitations and it can actually add another dimension to their lives, because it gives them an opportunity to learn about emphathy and consideration.

    And the fact you're thinking about it, and worrying about him shows you're a great Mum.

    Also – sucks weasels – this is a phrase I will be using regularly, so thanks for that!

  • Reply Coding Mamma (Tasha) September 24, 2009 at 4:22 pm

    You're right that having a baby brings bucketloads of guilt with it. However, if you can manage it, do try not to feel guilty. It is quite a small limitation if it does only flare up once month and will be something you can plan for. There are mothers who suffer horrendous PMT and have to make sure someone else is available to look after the children during the bad days. There are mothers who are physically disabled all the time, and they and their children adapt and all do fine.

    You and Piran will also adapt. You may need to organise extra help for the bad times. Or you may find you develop strategies that mean you don't need that extra help. And once you've adapted, hopefully it will become apparent, that adding another child into the mix should be fine.

    And hopefully they'll find a cure soon, too, and everything will be great.

    Oh and also, poor, poor you! It sounds horrible.

  • Reply Mrs OMG Pregnant September 24, 2009 at 6:47 pm

    Awww i feel for you. it must be so hard. remember this is all new, you'll find your coping strategy & will be fine. i hope things get easier soon xxxxx

  • Reply Kat September 26, 2009 at 1:05 pm

    Don't be so hard on yourself! If you have to slow down a little each month then you will find lots of interesting things to do at home that you don't do between flare ups. I'm sure you will find that he accepts it without question.

  • Reply Sandy Calico September 28, 2009 at 8:32 am

    'Sucked weasles', love it!
    You poor thing. I'm sorry to hear about the flare up, it must be horrendous.
    Did no one tell you about the whole mother guilt thing? Of course you should have had Piran. You know this and you know you're a wonderful mum. It's just one of those things you have to work round. I understand it's more of a challenge than you would like, but that what family is for.
    Definitely go back to the doctor, get a second opinion and a third if need be.
    Flippin' 'eck I've read that back and I sounds really bossy. Sorry, it's just because I care xxx

  • Reply Capital Mom September 28, 2009 at 10:27 pm

    That sounds awful. I really have no advice but I think you will find a way to do what needs to be done. Together you guys will find a way to do things together.

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