WHAT IT IS LIKE  TO LIVE WITH SOMEONE WITH A CHRONIC CONDITION

This week I thought it would be useful to give tips for the people who actually live with someone with a chronic condition; partner, spouses, parents, friends, anyone really. I starting writing this blog and then realised that it would be much more interesting to know both points of view, mine (the one that is sick) and my husband’s. So I decided to do a little interview with him and then add my own thoughts.

Me: What is the hardest thing when you live with someone with a chronic condition?

H: It’s seeing them go through the pain. Especially if you met them before they were diagnosed, because you know what they are like without the pain. You feel powerless towards trying to make them feel better, physically at least.

Me: What can you do to support them through flairs or particularly bad days?

H: I think one of the most important things is to try to put a positive attitude for them and try to push them towards positivity as well. It’s easy to spiral and loose yourself in the pain so it’s key to be there for them at difficult times. You also have to step up and help with the general tasks that they normally have to do as part of their daily routine. It’s also important to listen to their needs, because they know their body more than you do.

Me: What do you think you were doing wrong when I was first diagnosed?

H: Perhaps I didn’t appreciate the gravity of the situation and probably because of that I didn’t offer as much help as I should have. It’s easy to assume that everything is fine, because someone that is dealing with chronic pain will not usually look as though they were in distress.

Me: What did you learn from living next to someone with a chronic condition?

H: I leant that the symptoms for chronic pain are not always visible. I have learnt that my partner knows her body better and I have learnt to listen to her when it comes to this. Watching a person with chronic pain try to get on with their lives, despite everything that is happening, teaches you perseverance and how to be resilient, even when faced with adversity.

Me: What do you think people that don’t live with someone with a chronic condition can’t see?

They can’t see the suffering and the intensity of it. They can’t see that you can’t plan anymore, on a day to day basis or for things like holidays, because you don’t know what your situation will be then.

Me: How do you see your future next to someone with a chronic condition?

H: I think you have to take every day as it comes, enjoy the good ones and step up on days where they are not doing very well to provide support. Try to be a team.

In my experience all my relationships suffered since my health went out of balance. It hurts to say that the years that should be our best, the beginning of our marriage, having our first baby, were in fact filled with sadness, fights and silences. It’s kind of like going through phases, or at least that was for me. At first, I was really sad and scared when I was diagnosed. Then I got really angry once the disease got really bad and the effects went on for a long time. At the same time, I closed myself in a bubble of pain and I didn’t let anyone get into it, even my hubby. So, I can only imagine what it has been for him to be next to someone with all these negative emotions.

The biggest tip that I can give is that sometimes it’s better to listen to us, even our silences, than telling us “everything is going to be ok”. But at the same time don’t ever stop telling us that “everything is going to be ok”. It doesn’t make any sense, does it? That’s what living with a chronic condition is, it doesn’t make sense. Sometimes I need a shoulder to cry on, other times I need someone sitting with me for hours in A&E. I need someone that is ok with the fact that we can’t really make plans and when we do make them accept the fact that they might change. I need a very patient lover because a body in pain doesn’t think about pleasure, I need unconditional love when I can’t stop the tears. In return I can give you every good day I get in my life!

“I love you without knownig how or when or from where. I love you simply, without problems or pride.”

Pablo Neruda

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

I WENT VEGAN

 

Honestly I feel like I tried everything in the past few years, be it for my health problems or just for general health. Specifically about food, I have been to a nutritionist a few years back that specialised in treating digestive system disorders with tailored made diets. What I’m going to write is just my experience, I’m no expert and I don’t intend to give advise.
I had some blood tests done and the results told me if I had any allergy, intolerance or simply my body didn’t agree too well with eating particular foods. I thought “great! this is gonna work!!!”. She sent me home with a list of foods that I could eat and another with ones that I couldn’t. Unfortunately the first one was very tiny compare to the second. The nutritionist wanted me to cut almost everything, without considering my likes and dislikes, how much food I eat or how my body works; for example I have a really fast metabolism, I loose weight very easily and find it hard to put it back on. After a month of this diet, I was unhappy and grumpy all the time, lost weight (when I really didn’t need to) and didn’t feel any better. I still went on with it, I was allowed to reintroduce some food items but it still didn’t work for me. After 3 months I gave up.
Have you ever heard of “intuitive eating”? It is basically rejecting any diet mentality and honoring your hunger with what you feel is right for you, listening to your body when it’s full and when it’s hungry. When I was in a really bad flare with my chronic pelvic pain I found eating really difficult and skipped most meals. Obviously that didn’t have a good impact on my general health. I was staying at my parents’ because they were helping me looking after my daughter while I was in too much pain to do anything. I have spent a long time in bed which gave me the opportunity to look into different dietary approach. When I looked into veganism I immediately felt that it would suit me, at least for this period of my life. When I went back home I jumped ino it immediately; that was the first week of May. So it has been now a bit over two months and it’s going great, I listen to what my body needs, following the principles of being vegan. I learnt how to cook many yummy meals and snacks. There is nothing that I miss or crave and I learnt a lot about nutrition My energy levels are higher and I don’t experience fog brain anymore. My digestion is effortless now and I don’t feel bloated all the time. And I’m actually just enjoying eating much more.
Do I think everyone should go vegan? Did I force my family into becoming vegan? No and No! What I think is that you should just listen to your body and make the best choices for yourself. My husband is not interested in trying this approach to food and I let my toddler decide what she wants to eat. Interestingly enough she really loves fruit and vegetables , she likes beans and similars but she also loves eating dairy (milk, cheese,…) and doesn’t enjoy substitutes ( almond milk, coconut milk,…). I think when she is a bit older she can make her choice and decide which direction she wants to take about food.                                                                                                                                              I also started sharing pictures of my food online, I think it’s fun and makes me love cooking these delicious meals even more. And you get to know people that are on a similar journey who are willing to help and support eachother.
The most important thing is look after your body because you only get one and it will take you through life so it should be your most “valuable possession”. Love yourself!

INFUSION DAY 101 (How does it really work?)

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Since January 2018 I have been taking a new medication for my ulcerative colitis. It’s called Infliximab and is administered via iv. I have to have it once every two months; that means I have to come to hospital every 8 weeks for about 5 or 6 hours and get it done.
So let me tell you what happens when I come. I normally come in the morning between 8 and 9 am. When I get here first thing I need to do is a blood test to check that all the levels are good. If everything is fine I then speak with a doctor to briefly talk about what happened in the past couple of months and he then gives the green light to start. At this point I have to take an antihistamine (tablet) and steroids (through iv) to prevent allergic reactions. After 30 minutes I can start the real process which is the actual medication I’m there for. As I mentioned it is given through iv and it takes about 2 hours. Finally I have to do a last iv to flush and then wait 15/20 minutes to make sure I’m ok. Also every 30 minutes or so they check all my levels (blood pressure, heart rate and temperature ). And that’s it! I’m done!
Since I have been doing these infusions my Uc has been in remission which is great! It’s actually my best option so I’m happy with that.
Ok this was all the medical stuff, now how do I deal with it? Mentally, emotionally and of course physically. I have been doing this for a fair amount of time now ( they call me a “regular ” in hospital) but everytime I have to go, a few days before I get really anxious about it. I know it’s not a big deal and everything is going to be fine but I still get stressed. Since I have been dealing with my health issues I have been very fearful in life. Experiencing panic attacks when “something feels wrong” – and that could be anything; a weird sensation in my body, an inexperienced nurse, sounds, smells, and the list goes on and on. So in this particular case, when I go to hospital for Infliximab, I get myself distracted. This is how I manage to stay calm. That means preparation!
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I downloads movies or tv shows to watch, take a book with me, I bring food from home , I write (like I’m doing today), listen to music, meditate and very often sleep because apparently the medication makes you tired. But of course if something doesn’t go as planned, the first responce is to go in anxious mode. so how do I get out of it? Breathing (literally), slow and long breaths and thinking of letting go the negative thoughts. Our minds are so powerful but it’s up to us how we are going to use this power. I’m trying to train my mind into positive thoughts and strengths but also I’m trying to let go of less important stuff in life, baggage that we carry around from the past for no reason. Am I super positive all the time and strong every minute? Not at all!! I fail almost daily but I now take failure as a learning process , rather than failing at something. And I try to be more gentle with myself, if I make a mistake it’s not the end of the world , I can try again. So if I get anxious before my hospital appointment, it’s ok, next time I’ll try again and maybe it will be a different experience. Are you going to try to be less hard on yourself? I invite you to try. Also if you have any other tips or advice on how to deal with anxiety please share! Have a good week!
“With the new day comes new strength and new thoughts”
Eleanor Roosevelt

What’s my story?!?

I can’t remeber the last time I felt “normal”, so much has happened in the last four years. Some really good stuff but some not so great too. I want to start with the happy parts , because they are more important and what I want to hang on – obviously … I got married, I had a daughter , we moved into a nice flat ( compared to where i lived in the past, lol), I met some lovely people and I stayed in contact with amazing friends , I had the opportunity to spend more time with my family, I met my in-laws and love them!! I probably have more things but I guess these are the most important.

So why do I complain so much?? Well my health is what failed me in the past 4 years and it took me by storm because from being a healthy 30 something travelling through Africa, I became a sick slightly older stuck in my bed / home most of the time. When I was in Tanzania I got really sick and at first I thought , as did the doctors, that it was some kind of bug I got by living there. But nothing they were giving me was working, I was just getting worse and worse. So after a month I made the trip, on my own to Italy, where my family live, to get some help. It only took a few days in hospital and some very good doctors to figure out what was wrong with me. I was diagnosed with Ulcerative colitis , which is a chronic condition that causes part of my digestive system to become inflamed and ulcerated. I remember vividly when the doctor told me what this was. I felt like I was falling in an endless tunnel and I couldn’t breathe. He said to me it was no big deal and I could easily control it and have a normal life. It took me 4 years , hospital stays, a long list of medications and lots of pain , physical and mental, to find something that works for me. And that is some pills to take morning and evening, and a day in hospital to get a drip every two months. That is for the physical side but what about mentally and emotionally?? That takes a lot of courage, strength and help from others.

I’m sure what works for me is different from other people but I guess as long as you find the right thing for you it’s all good. For me it was therapy , for one year every week, meditation and the amazing support from my family. In primis my hubby , who was with me everyday, every hospital stay, who held my hand every time I cried, who patiently stayed in with me, who helped me raised our baby and was open to learn what I needed. My beautiful daughter doesn’t even know how much she helped me, she probably saved me from depression, she gave me a reason everyday to try my best and she gave me lot of cuddles.

So again you will ask , why am I complaining? I’m all better now, my ulcerative colitis is in remission, what more can i ask for? Well, I had a couple of good months and then something else started. An inexplicable pain that just doean’t go away. Imagine being in pain all day (that means night too) everyday. It has now been 4 months, I have been through many tests and spoke to different doctors in two countries , but the only answer they gave me has been something called ” pelvic chronic pain syndrome”. What does it mean? Nothing. It means I have a chronic pain , located in my pelvis but they don’t know why. Possibly my life is even worse now.

Does that mean I’m sad all the time? Does it mean I’m doing nothing all the time? Am i staying at home everyday? NO. NO. NO. This time I was ready for the battle. I knew what it feels like to be unwell every day, going to hospital all the time, just going through shitty times. I am learning to control my pain with breathing and meditation. So far these are the only things that get me trough my pain. I’m learning to embrace my pain, not trying to push it away. I’m learning that sometimes I have to stay quiet till I feel better and then I can do something. Everyday is a battle but I’m happy to fight it because I’m alive and that’s what matters.

Self-love is essential, and no I don’t mean that kind. I mean eating well, taking time for yourself, doing anything that makes you feel good. You heard this before? Because it’s true!!! After reading this take a vow. Tomorrow start doing one thing that makes you feel good. I’ll do mine, I’ll start writing this blog… for me.