Just a quick post to say that I’ve now moved to another site: http://www.motherhoodandotherstories.wordpress.com – please come and join me over there if you’d like to continue to follow my story 😊.
I suffer with anxiety. It is common for people with my disease.
This morning I am anxious. My chest hurts; I feel sick, light-headed and dizzy. I’m anxious about the future of my country. I’m anxious about the massive changes we are about to go through. I’m anxious about the state of the economy. I’m anxious about the hatred that I encountered at the polling station yesterday (a group of voters gathered outside laughing and talking excitedly about finally having the opportunity to ‘get rid of those dirty foreigners’ – I know that this isn’t representative of all those who voted leave, but that doesn’t change the fact that it happened). I’m anxious about all of the unknowns. I’m anxious about the state of the world that I’m bringing my children into.
My immediate response this morning was to freeze (the third F associated with anxiety – the one that rarely gets a mention). I didn’t want to get out of bed. I didn’t want to leave the house. I didn’t want to have to face the new world I’ve woken up in. And if I did leave it would only be to get a McDonald’s drive thru, or chocolate, lots of chocolate. Food will make me feel better. Food is comforting. Except I’m dairy free at the moment thanks to it being the cause of Eli’s eczema and I’m still breastfeeding, so that’s not an option. And seeing as I can’t actually stay in the house for the rest of my life either, what next?
Flight. Perhaps we should just leave the country. We’ve discussed it before. Maybe now’s a good time to go. There are plenty of international teaching jobs out there for Karl. We could start afresh somewhere else and leave this mess behind.
Although that option is appealing, it is no solution. So if I’m not going to retreat and I’m not going to run, I guess I’m going to have to fight. What it is I’m going to have to fight, I do not know. Perhaps simply my own feelings of anxiety (although I’m better off just acknowledging that they’re there and moving forward). Maybe it won’t be as bad as it seems. Maybe some good will come of this somehow…
People seem to focus a lot on the importance of health these days. When things go wrong for others, they are consoled with ‘at least you have your health’. When people are expecting, one hears a lot of ‘as long as they’re healthy’. When people are well wishing others they wish them ‘health and happiness’.
I agree that health is important. It can have a huge impact on one’s life. I understand this from first hand experience. But I also understand that it is not the most important thing. What if things are going wrong for someone and they don’t have their health? Does that mean there is nothing else good or positive in their lives? What if a baby is born unhealthy? Does that make its existence any less precious or valid? Is it not possible to have happiness without health?
Sometimes, when people find out that I have health problems, they tell me how sorry they are. They give me their sympathy. And when they do, I feel uncomfortable. I don’t need or want sympathy. Don’t get me wrong – I really appreciate the sentiment, but I feel completely undeserving of it. Why? Because – despite my health – I have a good life. I consider myself one of the lucky ones. I may not always have my health, but I do have many other things that are just as important, if not more so. I have a wonderful home, a wonderful family, wonderful friends, financial stability, happiness, love… And this face to wake up to every morning.
What I do want is your understanding, your tolerance, your patience and your compassion. Particularly on those days when my health, whilst not the most important thing, is having an impact.
My first appointment with the neurologist is tomorrow. I am nervous. I am hoping that he will tell me that I have no reason to be there and that I was silly to worry. I am worried that he will tell me I was right to come.
Valentine’s Day 2015 was Eli’s due date. I can’t quite get my head around the fact that a whole year has gone by since then. Everyone who has had a child tells you it goes by so quickly, and it really does. Of course, Eli took another 2 weeks to turn up, but he was absolutely worth the wait.
It’s really difficult to sum up what the last year has been like for me. I’ve been sat staring at this screen writing and rewriting and rewriting because I’m struggling to articulate what has happened and the change that I have gone through. All that I know is I am different. Completely different. In a good way I think (I hope).
I wish I had documented more of the past year on here really, but I just haven’t had the time (or the energy!). Instead I’ve ended up documenting it in (far too many) photos. But today, a year on from the day I was due to become a mother, I wanted to take the opportunity to write down the one thing that it has taught me…
My body can.
Anyone who is a mother will know that pregnancy, followed by childbirth, followed by living with and taking care of a newborn baby takes a huge toll on your body. As someone with a somewhat dysfunctional body, I was really worried that I would not be up to the challenge. In fact, doctors flat out told me that I wouldn’t be. They told me that I was unlikely to be able to conceive, let alone carry a baby to term (see post ‘The Girl Who Cried Wolf’). But I fell pregnant immediately, and I carried Eli to term successfully. And then I gave birth, completely naturally, with no complications. This in itself was such a positive experience for me; my body that had failed me so many times did something right and well (for the full birth story click here).
Following the birth, I did take a little longer to heal than one would normally, and I have had to have a few surgeries in the aftermath. I have also had a lot of infections and a few flare ups. But I have managed. My body has managed. In fact, my body has not just managed; it has sustained itself and another life entirely. I find this incredible! Of course, this is all what my body was made for. But previously I had such little faith that it would be up to the task. I had such little trust in its ability to do what it should naturally. This past year has shown me that I was wrong.
All I need to do to see how good my immune system actually is, is to consider how many colds Eli has had and how many I have had living in such close proximity with him. His immune system is not fully functioning yet, so he has had cold after cold after cold after cold. And of those many colds I have caught exactly none… Until today, ironically (I am sat here sniffing away!)! But still, that’s at least 10 colds that I did not catch. And for someone who thought they had a really awful immune system, this just serves to bring some perspective. Some hope. Some faith in my body’s ability to do what it should.
That’s not to say that things with my health have been perfect. The past few weeks have been a little worrying because I have developed a new symptom. I have been experiencing involuntary movements in my hands and have been referred to a Neurologist. As it stands, I have accepted a diagnosis of Fibromyalgia, but I have always questioned the diagnosis of Crohn’s Disease as I just don’t have most of the normal symptoms. MS is something I have previously wondered about and worried about, but up until now I have never been to see a Neurologist or been investigated for it. And although these new symptoms do worry me, they do not worry me anywhere near as much as they might have this time last year. Because whatever might be going on in my body, in this past year it has achieved so much more than I thought it ever could. I have become a mother, and this in itself is more than I could ever have hoped for.
I am half Indian. I travel to India every few years. Every time I travel to India I am ill.
I love India. The distinctive smell, the chorus of car horns, the abundance of colour, the cows roaming free. And the people. Especially the people. They are humble, they are kind, they are cheerful, they are warm. I would not normally be happy to give my child freely to a stranger; here I am at ease handing him off to the staff of the hotel. I do not worry if he leaves my sight. He is in safe hands. And my family. A family full of intelligent, interesting, talented and fun people. A family I wish I could see more of and know better. I am sure that my life would be richer for it.
I hate India. The anxiety over every menu. The anxiety over every mouthful. The painful stomach. The frequent trips to the bathroom. The longing for my own food, my own bed, my own toilet!
Today we cut our trip short as every one of us is ill (apart from Eli, thank goodness!).
I am sad to be leaving.
I am glad to be leaving.
India: my love/ hate relationship.
The past few weeks have been a challenge. I suddenly started feeling extremely hormonal and having recurring room spinning, can’t breathe, need to sit down before I pass out type moments. Crying on the kitchen floor because I didn’t have the capacity to decide what to eat, let alone make it, became a regular occurrence. At first I thought it might be the dreaded return of that time of month, and when that didn’t show up I jumped on the ‘I think I might be pregnant’ bandwagon again. When the pregnancy test said ‘not pregnant’ and my emotional episodes continued, I had to accept that maybe I was suffering with Postnatal Depression (PND).
Having an autoimmune disease means that I am more prone to mental health issues (check out this report), and the health visitor had told me I needed to be on the look out for PND as a result. I thought I had managed to avoid it, as up until about a month ago I had been feeling quite alright, but apparently it can appear any time up to a year after giving birth. I felt overwhelmed. I felt emotionally saturated. I felt concerned that this was affecting my ability to be a good mother.
Previously I have dealt with anxiety and depression (and the insomnia that comes with it) by using anti-depressants and sleeping pills. Neither of these is an option for me whilst breastfeeding. And since breastfeeding is something I feel positive about, I did not want to give this up. So I asked for help.
I’ve never been particularly good at asking for help when I really need it. There’s something about making myself vulnerable and the fear of being let down or refused help that has previously scared me into silence. And then the problem would get so big that I would stop coping altogether and my brain would just completely shut down. I knew that I couldn’t do this this time around because it wouldn’t just impact upon me, it would impact upon my son.
So, although it scared me to do so, I told my family, I told my friends, I told my doctor and the health visitor. I asked for help. And I got it. I’m meeting up regularly with other mums and getting out of the house to go to baby classes, I’m exercising regularly (buggyfit with the other mummies plus a couple of classes with grandma looking after the bubs), Karl is doing all of the food shopping and most of the cooking (and has taken the bubs out this morning so that I can have a bit of time off), mum is sending over her cleaner once a week for an hour just to help me keep on top of things, and I’ve been back to see my therapist.
The therapist actually thinks that this has come on in part due to pure exhaustion (my energy levels are generally pretty low anyway thanks to the Fibromyalgia, and Eli is just a bundle of energy these days!) and in part due to my own separation anxiety meaning that I don’t allow myself a break from Eli even when I’m offered it. (I had previously thought that separation anxiety was something that only babies get, but apparently mummies can get it too which has been quite a revelation to me!). So this week we are moving Eli into his own room and I am actively spending time away from him (*sob*!).
Although I still have the odd moment, after asking for help (and getting it in abundance) I am feeling reenergised and refreshed, and particularly grateful for the support network that I have around me.
In all of this though it has played on my mind that there must be many out there that need the help but aren’t lucky enough to have access to the kind of support that I have. Did you know that more than 1 in 10 women suffer with PND after giving birth? The likelihood is that you know someone who has suffered or is suffering with it. And if you think you might be suffering with it, please don’t suffer in silence. Ask for help (if you don’t have friends or family to ask, speak to your GP or health visitor and take a look at this website). No woman is an island; we weren’t built to do this on our own.
(Please note: This is quite an introspective post, so it might not be of great interest to the reader. I find writing helps me to refocus and reframe things so this was more of a therapeutic exercise than anything else).
I’ve been thinking a lot about identity recently. I’ve realised that since having Eli I’ve become so consumed with being his mother that I have somehow lost who I am without him. The fact is though, I had been struggling with identity and what defines me for a while before that.
For the vast majority of my life I was a committed Christian and my identity was tied up almost entirely in my faith. Who was I? I was a woman of God. So of course when I lost my faith (through no big incident, only a slow realisation that I was doing what I was doing because I loved the church and not because I loved God) my foundations were shaken and I felt very lost.
It was at that time though that I was training as a teacher and so I began to define myself as this. In fact, I realised that this had been part of who I was for far longer than I had had it as my chosen career. I had taught for many years in various different formats through the church. So that was who I was – I was a teacher.
Except then I got ill. A lot. To the point where I had to quit teaching and once again felt lost. At this point it was hard not to feel defined by my disease. Even at school I felt as though I was ‘the ill one’ (and ever so often ‘the annoying one who puts up her hand all the time and corrects the teachers’). And this seemed to have followed me wherever I went. Mainly because wherever I went I was ill. But I was desperate not to be defined by this and took hope from those such as William Wilberforce and Florence Nightingale (and a certain fictional president from the West Wing) who suffered with similar health issues but weren’t defined by them.
A friend and I decided that we would work through a book together called What Colour Is Your Parachute? It had been recommended to me by a few people and I thought it would be worth a go. We didn’t finish it because she got offered a masters and I fell pregnant, but the one thing I took from it was that I am a developer. Improving things and developing people is fundamentally what I take pleasure from and, I believe, what I am good at. As a Christian my focus was on improving and developing myself and helping others to develop in their faith. As a teacher my focus was on developing my pupils. And in my time working for the DofE (a charity focused on developing young people) the tasks that I took the most satisfaction from were those which involved improving our processes and developing new ones. Now, as a mother, it is my job to develop my son and (hopefully) to help him discover who he is.
So perhaps, in fact, I have not lost who I am at all. I am still who I always was: a developer.
Today Karl and I have been married for two years. (I’m actually writing this the night before, between my two sleeping boys in a hotel room in Miami, as I do of course want to give my husband my full attention on the day!).
We met when we were 23 and both training to be teachers. We had been placed in the same school in Greenford. I remember the morning very well. I was the first trainee to arrive (I had arrived so early that I had driven around Southall to kill some time) and I was soon joined by an older Indian man. He was a little on the creepy side (he didn’t finish the first placement, which is probably a good thing) and I was desperate for someone else to arrive and rescue me from the awkward conversation. And then in walked Karl. It was not love at first sight. In fact, my first thought upon laying eyes on him was ‘what on earth has this boy done to his hair?!’! (A fact which I love to remind him of) (thankfully his hair has greatly improved since!). But we hit it off straight away and two months later our firm friendship took a romantic turn.
It was around this time that my Fibromyalgia started flaring up. I didn’t know then that I was ill. I just thought I had a crappy immune system, and I had assumed that the lower back pain I had experienced the previous summer (see post ‘ignorance is bliss’) was a mechanical problem. That December it was my hands that had started flaring. I began to experience a lot of pain in the base of my thumbs, and things such as turning door handles and putting pressure through my hands to get up from sitting became very difficult. So even in the earliest stages of our relationship Karl became my helper, opening doors and aiding me in standing up (to any onlooker he was a real gentleman!).
9 months later, we had moved in together and were beginning our year as newly qualified teachers (NQTs). This is known to be one of the most intense and stressful years of a teacher’s life. Still without a diagnosis or really any idea that there was something bigger going on, my neck and shoulder began to flare. No doubt a result of the stress at work. Karl went from being my helper to my carer over night. He did all of the washing up and cooking. He helped me to get dressed and undressed. And on the very worst days, he lifted me in and out of the bath and carried me from room to room. This was less than a year into our relationship. I am sure that many others in his position would not have stuck around this long.
But Karl did. And then he stuck around when I gained two stone and a whole lot of facial hair thanks to steroids. And when I finally got my diagnosis. And when I made the difficult decision to quit my job. And when I was suffering with such severe depression and anxiety that I had to be admitted to a mental health clinic.
In fact, he didn’t just stick around; he proposed to me. On the most beautiful day in Central Park, New York.
I have no big announcements this time around. Only that I’m so incredibly grateful to have found love. Not just the romantic lovey dovey kind, but the nitty gritty, day-to-day real love that takes commitment and effort. The kind that sticks with you in sickness and in health.
The baby is still asleep, and rather than doing the (horrifically high) pile of washing up I thought I’d write a quick post.
I’m sat on the end of the bed (because I can’t use the baby monitor as bubs is asleep in our bed and I daren’t move him to his own as it’ll wake him) (we have one of those movement sensor baby monitors, so if I turn it on the alarm will go off to tell me my baby isn’t breathing) (why didn’t I just get a normal baby monitor!?). ANYWAY… I’m sat on the end of the bed in my workout gear (and a half done up baby carrier because I thought I’d try it out again) because I’m absolutely determined to go to the gym today. I have missed the last 4(?) weeks worth of sessions thanks to a stupid virus that won’t go away. I have just finished my third lot of antibiotics and I can say with absolute certainty that they have done nothing (apart from mess up my eating routine thanks to me having to take them 1 hour before food and 2 hours after food 4 times a day… Try figuring that out when you barely have time to eat anyway thanks to a super demanding baby!). Most probably because it is in fact a virus and not a bacterial infection (in case you didn’t know, antibiotics only work for bacteria, not virus). The symptoms have been tonsillitis-like and yesterday I went to have some blood tests to see if it’s my glandular fever again (mononucleosis or ‘mono’ for those of you outside of the UK).
Usually, if you’ve had glandular fever you don’t get it again because your body has built immunity. Apparently though, if you have an autoimmune disease, it can reactivate. To date, I have had glandular fever 3 times: once in year 8, once in my second year of uni, and again about a year and a half ago. This will be my fourth time of having it if it is in fact the good old gf.
I’m not certain that it is though. If it is, it feels different/ isn’t as bad as previous. Perhaps the difference is that this time I have a child and I don’t really have the option/time to be ill… I’m pretty sure I wrote about this in my last post (my memory is horrendous these days!). Either way, being ill repeatedly for prolonged periods is nothing new. My body is more susceptible to infections than a normal person’s and it struggles to get rid of things – it’s just part of having an autoimmune disease. My only hope is that it doesn’t impact on another holiday… We’re off to NYC and Miami in a few days (hooray!) and I desperately want to be well for it! My glands aren’t up today, so here’s hoping…!
Ooh, someone just woke up!
(And in case you’re interested in his journey, Eli has been writing his own blog at http://www.notesfromasmallboy.wordpress.com)
I have tonsillitis. I knew it was tonsillitis before the doctor told me that it was because I’ve had it so many times before. In fact, the first time I passed out was when I had tonsillitis. I remember it well. I must have been about 13 and I was at the doctors’ surgery. I was waiting outside the room because the patient before me had just thrown up. I remember telling my mum (who was there with me holding my then baby sister) that I thought I was going to throw up too. Then I remember waking up to a nurse saying ‘nope, she’s out cold’.
I was worried that I might pass out this morning. Normally my worry when I pass out is that it will happen when I’m alone (this has happened a few times – not fun!). This time my worry was that I was not alone. I was with a baby. A baby that I could not look after if I passed out. A baby that could not look after himself.
This worry, the worry that I will not be able to look after my child if I am ill, is a worry I carry. The fact is, I get ill a lot. This is part of living with an autoimmune disease. Sometimes I get so ill that I can’t look after myself, let alone a baby. I have wondered how responsible it is of me to have children if there is the possibility of me not being able to look after them properly. I made the decision that I shouldn’t live in fear of my disease though, and I am glad that I made that decision as I couldn’t imagine a world without Eli now.
The phrase ‘life goes on’ has taken on new meaning since I have had a child. Now I don’t really have the option of stopping! So despite having tonsillitis, I still managed to get up, get dressed, get baby dressed, put a wash on, unload the dishwasher, feed myself, feed my baby, hang up the washing, clean the bathroom… Pre baby these are things I would never have done when feeling like this. I would have stayed in bed.
Thankfully Eli has been in an exceptionally good mood, which has made things just that little bit easier. He has allowed me to rest when I have needed to (as has my husband who is a wonderfully hands on father). But he has also encouraged (or perhaps forced!) me to keep going despite my illness. I am hoping that this is a sign of things to come. Not that I’m going to keep getting ill, but that this little person will give me a reason to keep going and to keep living life despite health setbacks.
Ps can’t quite believe this boy is now 4 months old!!