BEING A MUM WITH A CHRONIC ILLNESS

I admit it, I’m struggling as a mum. Actually I feel like I have been struggling since my baby was born. Let’s step back for a sec; I had a pretty straightforward pregnancy, just the usual nausea, heartburn ,etc. When my baby was born, as any first-time mother will tell you, my world was turned upside down. As hard as it was, and still is, I think what I struggle the most is being sick (in pain or any other symptom is on that day) and being an attentive mum.

I always wanted to be a mum and I had so many expectations of what I could do with my daughter. Then reality hit, and I found myself struggling to get to the end of the day. Yes, because being a parent doesn’t stop when you are sick , especially if you don’t have people around you that can support. It’s just me and my husband, who obviously goes to work 5 days a week, sometimes even more. So you find yourself doing things you promised you would never do, like putting the tv on because you just can’t keep playing or doing whatever it is that your daughter wants to do. Or screaming at her, when really, she is just being a toddler. And then you feel awful because you never wanted to scream in the first place. So how did I survive?

If I can give any advise to new mums with a chronic condition (and without) is to be gentle on yourself. You are gonna make mistakes and you are going to compromise but as long as you balance a bit of everything, your kids will be fine. The less I stress, the easier it is to manage our days.

I tend to plan as much as I can, like the food we are going to eat, the outings we are going to have, the things I need to do for myself (don’t get excited, like cleaning the house) and then I’ll go with the flow during the week. Meaning, if I’m ok I can just follow my programme; if I’m not feeling fine I’ll go with plan B, basically survival mode. For example, we watch a movie, play a game in bed (we use flash cards for shapes, letters and numbers), we read a book or I just sit in her room while she makes me pretend coffee and cake. These are just things I can do while in pain but obviously everyone’s condition is different  and it may be that you need to do different kinds of activities. Basically do what you can! I used to think that my daughter will regret times with me because I couldn’t do the same things other mums did but I realised as long as I’m there for her, she will love me unconditionally. Kids are  really amazing!!!

Also I have always explained everything to her regarding my health situation. Obviously she can’t really understand in detail yet what is happening to me but she knows mummy has a pain in her tummy, most days; that mummy goes to hospital to see doctors a lot, that mummy takes medicine every day and that some days mummy can’t do too much because she is not feeling well. She has been a few times to the doctor with me, for things like blood tests or follow up visits. Obviously she was not there when mummy was really sick and couldn’t even stand or move or talk because of the pain. I don’t like the idea that she sees me in pain but at the same time this is our normality, so I don’t think I should be hiding it.

So why did I say that I’m struggling at the beginning? Because this is all theory but in real life some days are just really hard. And I think, even though I rationally know I shouldn’t, I still feel sometimes the guilt of not being that “we can do anything” mum. But I’m working on it. Being a parent is a never ending learning process, every day you discover new things about your daughter or yourself. And even if we have some tough days , my baby is my strength, she is what keeps me going. So good luck…but really though enjoy the good and the bad, because this is life.

 

“Childhood is a short season” Helen Hayes 

 

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WE MOVED TO AN ISLAND

I have been living in London for more than ten years, I had good and bad times, left it for a couple of years for a break in a far away land and started my family there but , lately it felt like I got everything I needed from this city and I was ready to move on. My health is obviously a big factor  and I started craving life in a quieter place , to live with a different lifestyle. Then about 6 months ago my husband  got a job offer outside London and after some thinking we decided it was a good opportunity for him. We starting doing the part-time living together thing, where he was working there for three days a week and the rest from home. The job wasn’t just outside London , it was on an island , the beautiful Isle of Wight. Me and the little one went with him a few times, just to explore new places. The first time I went, I really didn’t like it! It was so different from what I was used to; but let me tell you a little secret, that’s a very common first reaction I have with things and even people when they are new to me, ( I know I need to work on that, not proud of it). It happened when I met some of my best friends to date and even my husband….I know shocking!!! Going back to the island, after each trip I started to see all the beautiful things that you can find there. Starting from the obvious, living close to the sea, a dream I always had. There is also a lot of green everywhere, lots of nature to explore. There are lots of places to visit with kids, it’s very family oriented . People are so different here, they actually smile at you and talk to you; I don’t wanna offend anyone but in London people are just so busy all the time, running about their life and they don’t really spend too much time connecting with the person next to them. Obviously not everyone is like that but most people, I feel.

So we took the big decision of moving out of London and three weeks ago moved to the Isle of Wight. We were very lucky and found a beautiful house, five minutes from the beach in a lovely community. I have been really quiet for the past month, a lot has happened and I will eventually talk about everything. My health is not great right now but not too bad either so I’m just trying to settle here. So far it has been amazing!! Yes you don’t have the chains of restaurants and shops that you can find at every corner in London , deliveries here are slower, you do need a car more than you do in London but in return you get days at the beach, fresh produce to eat, peace and quiet everywhere, friendly chats with neighbours and sunny days outdoor.

I believe everything happens for a reason and you can influence your future with your thoughts. I know I might be a bit naïve and this obviously doesn’t always work, otherwise I wouldn’t be in pain everyday  but you can’t deny that sometimes you ask and the universe gives you what you asked for. So my “mission “ here is to work on being more positive about life, after lots of dark periods. I already changed so much in the past year but there is a lot to work on still. Do you have a positive outlook in life, even in difficult times? Do you have any advise on how to keep positive? Please share, you could really help someone that is going through a rough phase.

For me it’s focusing on all the little joys I have in life, even when I’m in pain. Sometimes It’s about thinking about your blessings, like having my family and living in a beautiful new environment ; and others can be about more material things, because why not?!? I have been really enjoying buying furniture for our new house to make us feel comfortable and home. Every little thing that can give you reasons to keep going through an unfortunate chapter of your life is useful, keep hold of it and it will take you into another stage.

 

“Our greatest glory is not in never falling, but in rising every time we fall”

Confucius

 

 

Travelling with a chronic condition…and a toddler.

Holiday…travelling…everybody enjoy going away; I used to love to get on a plane and go in a different country, even since I became a mom it hasn’t really been an issue to travel with my daughter, we have been going away since she was six months old and very often just me and her. But everything changed since I have been dealing with chronic conditions. Now I start stressing about it weeks before I even leave, and of course I know it’s the worst thing I can possibly do with my conditions but there is no way of controlling it. I stress because of past memory, I had bad experiences before while travelling so everytime my mind goes there.

The only thing I can rationally do is to prepare myself, as much as I can. Before I leave I try to think of all the scenario I could possibly go through, to tell you a few that happened in the past : I fell sick at the airport on my way back, I experienced chronic pain while away on holiday, I had to go to hospital, I had to stay longer,… Next is preparing little kits that could be helpful in certain situations, for example my airport kit; I bring it in my carry on bag, normally a backpack and it contains: a change of clothes (including underwear), wipes, my “emergency medications”, a hot water bottle (empty), some kind of hospital paperwork that explains my conditions ( in case I have to explain it to staff at the airport, it actually happened!!), Rescue spray ( it’s a mix of Bach flowers that helps during stressful moments), lavander roll on, antisickness wrist bands, orange essential oil ( it helps with sickness). Also I bring in the carry on bag all my medicines in case my luggages get lost, stolen or flight are delayed so I don’t have to worry about missing them; and I bring an extra week woth of medicine on top of the days I’m travelling for in case I have to stay for longer. For my little one a lot and I mean a lot of entertainment and snacks, which obviously changed through her different stages but for example right now that she is two I brought for her: a colouring book with crayons, a few of her favourite character (right now the Trolls), a couple of books (if possible new ones so she is more into it), stickers, a magic board and of course an Ipad with a few games app for her age and some her favourite videos. It sounds a lot but kids get bored really easily, at least mine, so I rather have extras.

Things can still go very wrong, like they did in our current holiday, yep we are on holidays at the moment and let’s just say it hasn’t been the most lucky one but I’m trying my best to enjoy the positives. I think it’s very important to become realistic and know that chronic conditions are 24/7 and din’t take any holiday, ironically, so they can come anytime. Once more I had to visit the hospital while I’m away and I have been spending the past couple of days in bed while my family goes out and fun. Don’t take this wrong ,I’m extremely happy that at least they can have fun but ,of course I’m going to be upset about ruining my vacation time. Accepting that I will get upset when things go wrong and it’s ok if I do was one of the turning point about my journey living with a chronic condition. I had three amazing days of beach time with my daughter and enjoy every little thing, playing in the water, the warmth of the sun, a swim in the sea, her laugh and yes a bit of a tan!! This is all I want to remember! And the holiday is not finish yet so I might be able to enjoy a few more days.

A few other things I prefer now when I travel are:

*stay in houses rather than hotels. I fell like I have more freedom there if I’m not feeling well and also my daughter has more space to move. We can do what we want about food, eat in or out, whenever we want. I have a kettle for my hot water bottle or I can boil water on a stove. And other little things.

*know in advance where are the hospitals and which one have ER. Unfortunately I need them very often so once again I rather be prapered.

*Have netflix installed on my phone or Ipad. Seams silly but if I have to spend a few days in bed that’s one he things I do to distract myself.

*Document myself on what kind of food I can find there and if it’s necessary bring with me a few essentials. Seams silly but when I’m not well I can eat a very few things so once again better prepared than starved.

Even though I have to face a few extra challenges when I travel, I will not stop. It’s one of my biggest passions and something I love doing with my family.

Don’t stop doing something just because it’s a little hard, always look at the bright side of things; is it realistic to be like this everyday ? No , but that’s ok, as long as you try your best to live the life you want to live.

” Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did. So throw off the bowlines, sail away from the safe harbor. Catch the trade winds in you sail. Explore. Dream. Discover. ”

Mark Twain