Faye's Story

                       Sammi, Faye and Millie

                      Sammi, Faye and Millie

I was asked to write about what its like to be a Mum when you have a chronic illness. I thought about it for ages and had so many thoughts, I really didn't know where to start! In the end I decided the best thing to do is to be honest. So here is my most honest post to date. And most definitely the longest! Yeah, sorry about that.

Ok, so before I start banging on about how hard my life is, I'd like to start by saying I understand there are mums and dads (with and without illnesses) that have it a lot harder than I do. Single mothers/fathers, People with 5 kids, people with kids with illnesses, you lot all have it wayyyy harder than I do and I salute the cr*p out of you guys, like, I literally bow down to you because you are amazing! So this is just my account, from my point of view, of what it is like to have a child when you have a chronic illness....

I'm gonna give y'all a little back story just so it all makes sense so bare with me. Please also note, some of this might make for uncomfortable reading as I have decided to be completely open and honest about all aspects of my life.

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I was diagnosed with Lupus in 2011 when I was 25 years old, I'd been unwell on and off for a year or two before I finally got my diagnosis, at the time I was also diagnosed with APS, Sjogrens and Fibromyalgia which was almost a relief as after being fobbed off by different doctors, I was starting to believe it was all in my head! Anyway, it was really bad timing as I'd just moved in with my boyfriend, (now my husband) I had a well paid job as an Office Manager, lots of friends and to be honest I was absolutely loving life, I had it all and was on top of the world! The diagnosis knocked me for 6, I literally felt like my world had been turned upside down and torn apart. The hardest part to comprehend was the fact that I'd have these diseases for the rest of my life as there aren't any known cures and I was terrified by the thought of being in pain forever.

I plodded along in a fog of 'boo hoo, poor me' for a while and then I had a particularly bad flare up that left me bed ridden for months. It got so bad I ended up on chemotherapy drugs, I lost a lot of my hair, I gained weight, I lost friends (because I practically became a recluse) and I ended up quitting my job. During this time I was also warned that getting pregnant would be difficult and my chances of miscarriage were extremely high due to the Anti-phospholopoid syndrome or APS to you and me. 

I hadn't really thought much about having kids at that point, I still felt too young and had more things I wanted to do but it obviously got me thinking and I realised I did want children at some point. It's funny how growing up you just assume you will get married and have kids, you don't expect to be told it might not happen for you. 

I got home from that appointment and was in complete bits. Sami came home from work and we discussed all our options, we even discussed adoption/fostering which is something I'd still like to look into. He was so supportive and I will never forget what he said. He looked at me and said, 'Just because things might not turn out the way we expected them to, doesn't mean we won't be happy.' I was still devastated but those words wrapped around me like a huge, warm hug and I felt so much better. I knew I'd be ok because we had each other. We decided we'd concentrate on my health and once I’d been flare up free for 6 months we'd try for a baby. 

A few months after that shocking news, Sami proposed to me. It was kind of expected as we'd been together 6 years, lived together a couple of years and I was starting to think about marriage etc. I wanted a ring on it! A year later we got married. I was so happy and realised giving up work did me good. I still had the odd flare up and bad days here and there but not having the stress or pressure of work meant I could live an almost normal life. I was off the chemotherapy drugs, I had hair and was back to a weight I was comfortable with. I decided it would be a good idea to get a part time job so got a job at our local Waitrose on the meat and fish counter. I only did two days a week so it was a nice little work-life balance. I absolutely adored working there, I loved all my colleagues, I loved the customers, I used to feel like I was being paid to have fun! It gave me the little confidence boost I needed after such a hard couple of years. 

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I was doing so well that Sami and I had the chat about trying for a baby. There was a lot to think about such as the fact it may take a long time to fall pregnant, the fact I'd be very likely to have a miscarriage, or still birth, the baby could have growth problems. Then there was the how will I cope? Who will look after the baby when I'm unwell? How dangerous could this be for me? There were so many questions and so much to think about but weirdly I didn't care. I was so broody that my emotions took over. There was also the fact that we lived in a one bedroom 5th floor flat that needed completely refurbishing. Sami wanted to buy somewhere bigger and more practical first. (Sami is always the sensible one in this relationship) but we could have lived in a bin, I wanted a baby so bad I didn't care.

Eventually, we came to the conclusion that it would be a long time before we actually had a baby so we could look into moving and figure everything out whilst trying. Of course I got pregnant straight away. When I told Sami he genuinely didn't believe me! 

The doctors kept a very close eye on me, I had scans every 3 weeks and was told to relax as much as possible. I was remarkably relaxed throughout and loved being pregnant. I had a wonderful pregnancy and I loved having all the regular scans. We managed to get some money together to get a new kitchen and bathroom which was fun whilst I was 8 months pregnant! We set the cot up in our room (which just about fit) and my mum agreed to look after Millie when I went back to work. She had her one day and then I worked on a Saturday so that Sami was at home. We had it all worked out.... But no one or nothing can prepare you for how hard it is!

We were lulled into a false sense of security as Millie slept 12 hours a night from day one. We used to have to set an alarm to feed her in the night! Once she got to 6 weeks old we let her sleep through. She was a dream. Other mums would give me evils when I told them but I always tried not to brag about it as I didn't want to upset people. I was just so glad she was a good sleeper as without that I could have become very unwell. I had a 90 hour labour and a traumatic birth which resulted in a large amount of blood loss so I desperately needed that initial rest! 

Due to Millie sleeping and feeding so well, I honestly found it easy. I wondered why new mums always banged on about how hard it was! I slept when she slept, I was still able to get the housework done, I had social life inbetween, I even considered having another one! Thank the lord Jesus Christ I didn't! 

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When Millie was 5 months old, I went back to work and that's when life got really tough. Millie was teething when I was due back so sleep was a thing of the past. I started work early at 7am and Millie cried all night. What happened to my dream baby?! My first day back on next to no sleep was horrific! Millie continued to sleep poorly, crying pretty much every 2 hours every night for months. I was exhausted and my job was physically hard, on a busy day I'd easily do 20,000 steps. I look back and I honestly don't know how I did it. 

After a while I increased my hours at work so I was doing three days, starting at 6am till 2pm. I'm not sure why I thought that I was a good idea?! What was I thinking man? Waking up at 5am on hardly any sleep and going to work on my feet all day? I'd totally go back and slap me in the face if I could! Anyway, so I'd go to work then go to my mums to pick Millie up, get home, cook dinner, do housework and entertain Millie until she went to bed at 7.30. Some days I honestly hadn't sat down for 13-14 hours. Thank god for my Mum is all I can say. She has been a life saver on more than once occasion. She would plead with me to reduce my hours or leave my job, but I wanted to be superwoman, I wanted to show that just because I was in pain most days, I could still lead a normal life and work like all my other friends. I totally couldn't!

This lifestyle really started to take its toll. I was so tired, I felt like I was losing my mind sometimes. Some days I 'd get to my mums and hardly be able to move. Luckily she is amazing and would see how tired I was and offer to cook dinner for me and Sami and my Dad would take Millie to the park to give me a break. On days I wasn't at work I 'd be so tired I literally couldn't keep my eyes open. There were also times that I'd be in so much pain I could hardly walk. I'd have to ring mum and ask if she could come and look after Millie as I didn't feel like it was safe for me to do so! If my mum wasn't available I'd ask Sami to try and get home early or I'd ask my Mother in Law. A good support system is vital!

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This went on for just over a year until I reached a point where I thought I was having a mental breakdown. We finally got round to selling our one bedroom flat but the stress got to me. Our sale fell through 12 weeks into the process. We'd found our dream home and the thought of losing it this far down the line broke my heart. We managed to find a new buyer just in time and the place we wanted were happy to wait so it all worked out in the end but the stress caused me to have a huge flare up rending me bed ridden for nearly 6 weeks. 

Those 6 weeks were hell. During the week my parents had Millie and at the weekend it was down to Sami. The guilt I felt was off the scale! I'd lie there in agony feeling so guilty for not being able to look after my own child, I felt guilty for making Sami do most of her care at the weekend after he'd had a busy and stressful week at work, I felt bad for not being at work, I felt bad for making my parents worry, the list goes on and on. As a result of this and being on my own all day, I started to suffer with anxiety. It got so bad, I was waking up in the middle of night gasping for air, thinking I couldn't breathe. At one point I was physically sick. The anxiety escalated to the point where I was worrying about random things that didn't even make sense. I'd imagine these weird scenarios like me suddenly letting go of the pushchair and a gust of wind making it go flying into the road. I'd imagine all sorts of silly things like that and sometimes they'd be so graphic I'd wince.

The anxiety made my Lupus worse so I was waking up every day feeling hyper-anxious and in excruciating pain. Some days my knuckles would be so swollen I found it difficult to move my hands. The pain in my knees and back would make it hard to get out of bed and basically I felt like absolute cr*p. 

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It got so bad that I ended up self-medicating with wine. When I drank wine before bed I could switch off all the craziness going on in my head and it helped with the pain, as a result I felt like I could get to sleep more easily. I started drinking most nights and would need more and more wine to turn off the crazy thoughts. One day I hit rock bottom. I was sick one Tuesday morning after drinking heavily the night before. Millie was standing next to me saying, 'Mama, what doing?' and I realised there and then I had a problem, My 2 year old was right, what the hell was I doing?!

I pulled myself together and booked a doctors appointment that day and that evening I confessed to Sami what I'd been doing when he was out at football, he was so amazing and supportive, I couldn't stop crying. I felt so ashamed. I rang my mum to tell her I'd been drinking heavily most nights and fortunately, my mum used to help rehabilitate people with drink and alcohol problems so she knew exactly what to say and what to do. I told my immediate family and my closest friends what had been going on and I'm glad to say I have come out the other side. I quit drinking completely for 6 weeks and now I just drink socially, I do love a glass of wine but I am able enjoy a glass or two at the weekend rather than necking an entire bottle in an attempt to suppress all the horrible feelings. I have addressed my issues and I'm working through them. I'm also on the waiting list for some CBT as I defo need help with this anxiety! It wasn't easy to admit as that meant having to deal with it but I had no choice as I have Millie to think about.

What I didn't realise was that the alcohol was exacerbating the anxiety. I honestly thought it was helping! It was really hard at first but luckily I hadn't been drinking enough to become addicted. Instead of drinking in the evening I now listen to guided meditation videos on youtube or I do colouring in and when Love Island starts I will absolutely be hooked on that! Haha, I'm so hardcore.

As a result of losing my mind and not coping physically, I made the decision to leave my job at Waitrose. It was a shame because I honestly loved it but I wasn't coping. The physical aspect of it was too much for me, I was basically making myself ill. I decided it wasn't worth it. And it definitely wasn't worth not being able to look after my own child! I left in January and although I didn't miraculously recover over night, I do feel a lot better. I still have some seriously hellish days but the flare ups haven't been quite as severe. I also get to spend much more time with Millie which is great. I will have to go back to work at some point as we aren't exactly rolling in it but for now its better for us to be a little skint if it means I am healthier and can get out of bed! Health is more important than wealth! Oh God, sorry that sounds so cheesy! I didn't mean for it to come out like that!

So the past few years as you now know have been an interesting journey! Apart from losing my mind, a couple of jobs and becoming an alcoholic, its been wonderful! 

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Here is what I have learnt:

Having a baby and being a first time Mum is hard but when you have a chronic illness there is much more to consider. I honestly wouldn't have considered having a child unless we had a solid support system, which thankfully we do. We are fortunate enough to have all our parents living nearby and we have brilliant friends who would drop their plans to help if needed. Without my mum nearby I don’t know what we would have done, she has pretty much sacrificed her own life to help me and has gone above and beyond for Millie and I.

You learn to make the most of the good days and as a result I sincerely hope most of Millie's childhood memories are of those good days and not the days I was so tired I had to stick her in front of Peppa Pig for an hour.

You learn to accept help. If anyone offers to babysit/do housework/cook dinner, learn to say YES. You won't regret it.

You learn to accept your limitations. If you're tired don’t plan on doing all the housework. It can wait. Your child wont remember the time you didn't hoover but they will remember the time you played and had fun. 

You learn that Mum-guilt and anxiety are part of the course. Even for healthy mums. Suck it up buttercup.

You learn that everyone has a challenge of their own, this is your challenge, don't dwell on it, embrace it, accept it and find ways around it that work for you.

You learn that the most important thing you can give to your child is love.

And last but not least, you realise you can't be a perfect mum, no one can, but as long as you are doing your best then that is enough. You are enough.