Being a Mum

I didn’t have any time, or energy, to post anything last week because I was really busy preparing for, and celebrating, Reuben’s 2^nd Birthday. His birthday has prompted me to think about how much my life has changed since having him. My last few blog posts have been all about me, and my MS, so in this one I shall turn my attention to Reuben and being a Mum.

There is nothing that could have prepared me for the changes that occurred in my life after I had a baby. I knew life would be different and I had anticipated the sleepless nights, the endless rounds of nappy changing and feeding. But I had no idea about some of the other, subtler changes that would happen to me.

For instance, I didn’t know how much I would doubt myself and how worried I would be about some of the little things he did, or didn’t do. Is he too hot? Do you think he is overtired? Is he teething? Should his poo look like this? Is he ready to potty train? And so on. What I now realise is that this change is permanent. Even though I am an adult, I know that my parents still worry about me. Every phase of growing up has challenges and difficulties, so the worry never goes, the problems just change.

I didn’t know how busy my days would be, or the attention he would demand of me, and the energy it would require. I hadn’t realised that I would find it so difficult to hold conversations, because part of my attention always has to be on making sure he is safe. I also hadn’t realised how organised I would need to be as a Mum, or the number of things I would need to remember. What have we got for tea? Did I take that load of washing out? Have we got enough nappies? I must get more bread. Did I remember to pack his sunhat for nursery today? What will the nursery think of me? I bet ALL the other Mum’s remembered. Next week is Children in Need he HAS to wear something yellow on Wednesday! Where’s my phone? I need to pay the electricity bill, and so on. I didn’t know that I would forget to text my friends or reply to an email because I was so busy.

I also didn’t realise that when a baby is crying in a public place, or a toddler is lying on the floor in the supermarket, more often than not, it is no reflection on the individuals parenting ability. It is just normal. Babies and children cry. Toddlers have tantrums. I have now been that Mum with the screaming baby in the shops and the Mum of a toddler having a tantrum on an aeroplane. It’s not fun but it’s all part of the experience.

My life now involves play dates, Rhythm Time, soft play centres, children’s birthday parties and going to the park.   Every Monday morning I find myself singing and dancing with Gymbo the clown! I know every verse to every nursery rhyme, including the extended version of Row, Row, Row your boat! I choose my clothes based on how practical they are for kneeling and crawling around in. And yes I admit, that when I see my friends on Facebook going on exotic holidays or out for dinner, I am a bit jealous.   I feel slightly nostalgic for the times Luke and I spent doing those things before having Reuben. But even so I wouldn’t trade being a Mum for a lifetime of amazing holidays.

Why? Because being a Mum is brilliant! Watching Reuben grow and develop is amazing. His first smile, the first time he laughed, his first steps and the first time he said Mummy are moments I will never forget. More recently, the first time he counted to three unprompted when jumping into a swimming pool, I could have cried. I am in complete awe of his development and love seeing the world again through his eyes. And yes, I celebrate all of his achievements as though they are ground breaking, because he is mine!

So every sleepless night, every interrupted meal, every abandoned cup of tea is worth it. I feel incredibly lucky to be a Mum and to have experienced and to know the unconditional love that having a child brings. When he bumps his head or grazes his knee he just wants Mummy to kiss it all better. He looks to me with complete trust and faith that I can do anything; all the wrongs in his life can currently be fixed with a kiss and a cuddle or failing that a few sultanas. Luke and I are his everything and I feel such enormous gratitude that I am so privileged to enjoy this experience.

The sticky fingerprints on my windows, the pile of laundry that never goes down, the snot and toothpaste smears that I regularly wear all fade into insignificance when I hear a tiny little voice say “Cuddle Mummy”. And how could I refuse? Those precious moments where he wants a cuddle and his head is on my shoulder, his warm breath on my neck are what makes my life complete. I treasure every second and try to burn those memories into my mind because there will come a day where he won’t want to “Cuddle Mummy”. So I accept that right now life requires me to give of myself, and my time completely in order to focus on the most important job of my life, being a Mum.

I didn’t know that at times I would ache inside from the pain of watching Reuben go through an illness and not being able to take it away from him. I have heard people say that you would do anything for your children but I didn’t know how that would feel.   I had no idea just how much I would love him. It is a love beyond words and the most exhilarating and terrifying feeling all at once. To love someone that much is incredible but it makes me feel so vulnerable. I now know the meaning of loving someone unconditionally and feeling that their happiness is more important than anything in the world. Being a Mum completes me in a way I couldn’t have imagined and I feel so incredibly blessed.

So, a very happy second birthday to my wonderful little boy. Thank you for the best two years of my life so far.

Jigsaw

I have completed my first week of sticking to the OMS lifestyle. This week has been all about getting to grips with a lot of change. Making sense of the diet and the supplements I need to include, introducing meditation to my daily routine and finding out about yoga. Alongside that I have been doing a lot of writing, which helps me understand my feelings.

The different elements of this lifestyle feel like pieces of a jigsaw puzzle to me. All of the components are essential in order to complete the picture, but some pieces are easier to find and fit together far more easily. I liken this to my experiences this week, in that I have found changing my diet and taking supplements relatively easy changes to make. What I am finding more difficult are the spiritual aspects. Whilst it is easy to say I am focusing on taking a different path and allowing myself the time I need to heal, making those changes is far harder.

Prior to this I would say my approach to managing my MS has been fairly passive. Although at times I have taken control and sought help in the form of rehabilitation or active treatment for relapses, I have never been very good at sustaining this and, at times, through my own indifference to my problems, I have allowed things to deteriorate. For instance, my failure to comply with wearing splints has resulted in deterioration in the range of movement at my ankles. This was never a conscious decision though and was more a reflection of the way I was dealing with my MS as a whole.

My way of coping has been to shut down and lock my feelings away, ignoring them and pretending that this isn’t happening to me. I have found it easier to continue with life as though my MS isn’t a problem and deal with the consequences of this behind closed doors. I have lived my life with MS to this point, afraid that other people will think less of me because of it. Running myself into the ground and doing reckless things so that people won’t think I give in to it. My attempt to protect other people from the reality of my MS has only hurt me and is something I can’t allow to continue any longer.

Understanding these problems is the first step but I now need to make changes to stop myself falling into these habits. Part of this is going to involve being far more open about the difficulties my MS is causing me with my friends and family. Accepting that at times I will need help, or will need to ask for things to be modified so that I can join in, without causing myself problems. The other part is making a resolution to do whatever it takes to recover. Making this resolution will involve doing things I don’t enjoy on a regular basis, for example, committing to a regime of exercise, stretching and compliance with splints. Rather than seeing this as something negative I need to embrace this as a positive step I am taking to look after myself.

As I mentioned earlier this week, I have experienced further deterioration in my symptoms. Although this feels a little demoralising, it has actually strengthened my resolve to change and understand where I am going wrong. If I do nothing, I can be fairly certain that, at best, things will continue as they are, and at worst I will deteriorate even further. My biggest fear is that I am getting closer and closer to a point where there will be no way back and therefore the chance of a different outcome now lies solely in my hands.

So this week I have taken the very first steps on my journey towards a far healthier way of life. My challenge is to get to a point where all of these components fit together and are part of my life. Where they don’t take conscious effort; they are just part of me. That is ultimately where I would like to be and step-by-step I will keep striving to bring these pieces of my jigsaw puzzle together.

Imperfectly Perfect

In my quest to understand myself a little better, I have been doing a lot of thinking and have come to the conclusion that particular aspects of my personality make living with MS more difficult.

I am someone who likes to be in control, of everything, and don’t cope very well when things don’t go as I expect them to. Alongside a need for control, I am also a perfectionist. Having high standards and paying attention to detail can be a really positive thing and I certainly found it useful when doing academic work at university and when writing reports for work. But when it spills over into every aspect of life, it stops being useful and actually starts becoming detrimental. For instance, does it really matter how you chop an onion? It shouldn’t, it really shouldn’t! On one occasion it really did matter. A LOT!

Interestingly there was an article in a magazine I read recently about perfectionists, which resonated with me. A research study in the Journal of Psychosomatic Research found that perfectionists had more day-to-day fatigue than night-shift workers. I can totally understand that. I find it hard to live up to my own expectations and put a lot of energy in to trying. When I fall short of these expectations I then waste energy beating myself up about not having achieved what I wanted. In almost every other area of my life, I have always found that I can achieve whatever I want with some determination and hard work. Unfortunately, this doesn’t work with MS. In my attempts to be perfect, I waste a lot of precious energy that I don’t have. I have difficulty pacing myself and find it almost impossible to ask for help and accept it when it’s offered. As if by doing this I am admitting my own weakness. By constantly expecting more of myself than is realistic I end up feeling like I’m failing, when in reality I am just being far too hard on myself.

Another problem created by being a perfectionist, is that I avoid doing things or put them off for fear that I might do something wrong.   Take my blog, for instance, I have wanted to start writing again for such a long time but haven’t, and the only reason I can see for my procrastination is fear. Fear that I might not write perfectly. I know I don’t write perfectly but I get enormous pleasure from doing it and surely that should be enough? Although I am now writing I am also scared about inviting other people to read my blog. I am worried about what other people will think, that they will be critical, that they will pick out my imperfections. In reality, I don’t think anyone could be as critical of me as I am of myself; therefore what have I got to lose?

So after a complete character assassination of myself, what can I do to change? I have accepted that despite all the negatives, being a perfectionist and in control has actually helped me to achieve everything that I have in my life and without those characteristics I wouldn’t be the person I am. However, I am also trying to accept that whilst being a perfectionist serves me well in some areas of my life, there are certain areas where it is just unnecessary. Chopping onions, for instance! So, while I struggle to lower my standards and the demands I place on myself I will attempt to decide what is important to me, where I can ease off and let things be less than perfect. Where 80% would be ok. Perhaps in making these changes I will also find that I have more energy for the important things in life.

The irony is that perfectionism is actually an imperfection! So, in conclusion, I am imperfectly perfect! That’s all!

Day 5

After an initial burst of enthusiasm I must confess I am feeling a little deflated. Over the weekend I had a flare up of my symptoms and am struggling. I feel disappointed, as if somehow by making these changes and resolving to “Overcome my MS” that should somehow protect me from any further disease activity. It feels as though my body is laughing at me.

Despite my disappointment I have managed to maintain the changes and have stuck to the diet. I have also been meditating and have also made enquiries about starting yoga. As a result of my physical problems I knew I wouldn’t be able to manage a normal yoga class but managed to find someone that offers 1:1 yoga sessions aimed at restoring health. I am hoping we can adapt it to suit me but I still hold out hope that I will do a head stand one day!

I realised this weekend that although I have been worse physically with my MS, I have never been as generally unwell as I have been over the last year as a result of my last relapse.  I think my recovery is going to be a long, slow process and is going to require a great deal of patience.   It might take 3-5 years of following these lifestyle changes for my MS to fully stabilise so rather than thinking about short term changes I am trying to look further ahead and think about what I am trying to achieve long term. In the short term I just need to keep making positive steps to look after myself and trust that this will pay off long term.  I hope so.

Overcoming MS Day 1

Having read the Overcoming MS (OMS) book and resolving to start taking control of my MS in a more positive way. I feel I am embarking on a new journey, a new relationship with my MS that feels less about fighting it and more about looking after myself so that I can heal.

I was diagnosed with MS in 2006 and had my first experiences of the disease in 2002. My journey up to this point has not been an easy one and life has been incredibly turbulent with a lot of energy wasted fighting against my body rather than working with it. Rather than continue in that way I have resolved to just accept everything that has happened up to this point and consider this the end of a difficult chapter in my life. A chapter that has taught me some valuable lessons and brought me to this point where I am ready to change.

The OMS book has given me a really good starting point and having received my fish oil supplements in the post this morning and just having been to the doctors for a blood test to check my Vitamin D levels, today feels like a really positive start. I’m not sure what to expect, with regards to how easy or difficult I will find this change but all that is really important is that I strive to do things that help me live more positively.

In order to make following the lifestyle a little easier, I have download a few apps for my iPhone.  To help me keep track of what I’m eating I have downloaded myfitnesspal which makes tracking the amount of saturated fat I have eaten a little easier.  I don’t think this is something I will need to do for very long but in the short term it will help me to get a feel for how much I am eating every day.  I have also downloaded the Headspace app, which is an app designed to help people learn to meditate.  I am doing a 10 day free trial and will let you know what I think once I have completed the 10 days.

One of the chapters in the OMS book is all about the mind-body connection and Professor Jelinek recommends writing down feelings and keeping a diary as a way of helping to deal with some of the more difficult aspects of the disease.  I certainly find writing really therapeutic and think keeping a blog is a good way of motivating myself to keep writing.  I just need to find the courage to invite people to come and read it now!

Overcoming Multiple Sclerosis

As I mentioned in my last post, this year I have been looking for alternative ways to manage my MS and have recently made some fairly significant dietary changes which seemed to have helped.  Since then I have come across a book called Overcoming Multiple Sclerosis – An evidence based guide to recovery by Professor George Jelinek.  Professor Jelinek was diagnosed with MS in 1999 and this book documents the research he has looked at in order to come up with a lifestyle that has helped him to stay relapse free for over 10 years.

I was initially very sceptical about this, but having read the book, cover to cover, I am convinced.  He presents the medical research he has to back up his recommendations very well and he seems to be living proof that it works.  Regardless of how the changes work, adopting this lifestyle will only have a positive effect on my overall health and is something I am actually quite excited about.  For more information about the lifestyle changes, have a look at the Overcoming MS website

The dietary changes he recommends are very similar to the changes I have already made but this has given me the motivation I needed to give up meat altogether.  I have already booked a blood test at my GP to get my vitamin D levels checked and have also downloaded a meditation app.  I feel incredibly inspired by this book and feel empowered that I can make some very positive changes to my lifestyle that will hopefully have enormously beneficial effects on my life.

 

Alternative approach

2014 has so far been about finding a new way to manage my MS and this continues to evolve.

My previous management strategies have been purely medical, in conjunction with physiotherapy for rehabilitation. Coming from a medical background I haven’t even considered alternative therapies previously, being very much of the belief that there needed to be evidence to support a therapy before I was willing to try it. However, conventional medicine didn’t seem to be helping me at the time and in a desperate attempt to help myself I began looking further afield.

My research into diet as an alternative management approach was largely accidental. As a result of a relapse in August I was losing a lot of weight and was unable to take the normal supplements that would be prescribed in that situation because I am unable to tolerate cow’s milk. The dietitian’s weren’t able to suggest much in the way of alternatives so I started my own research.

Through my research I found out a lot more about vegan and plant based diets and felt as though I had stumbled across a source of recipes and information that would make feeding my family so much easier. Alongside the difficulties I had been having, Reuben has his own digestive problems which all seem to stem from food allergies. He was diagnosed with a milk protein allergy when he was 4 months old and we have since discovered that he also reacts to soya and eggs. Eliminating these things from his diet has meant we have to home cook almost all of the food he eats and finding a new source of recipes that would at least be dairy and egg free felt quite exciting!

So I decided that I was going to embark on my own health experiment and try adopting a more plant based diet to see how I felt. I wanted to see what effect it had on my energy levels, skin, digestive system, MS symptoms and the effect it had on my family. I wanted to see whether Reuben’s digestive symptoms improved and most importantly whether we actually enjoyed the food and found it easy to prepare.

So what did I find?

I have eliminated dairy, eggs, gluten and red meat from my diet but still eat a little bit of chicken and fish. Initially I intended to go completely vegan straight away but found I was spending a lot of time and energy learning how to cook new recipes and given the problems I was having with my MS I felt I needed to start slowly. I have definitely noticed an improvement in my skin since making these changes, areas of eczema that I have had for months have started to disappear. I also feel that I have more energy and the difference in Reuben’s digestive system has been quite remarkable. He is sleeping a lot better and generally seems very content. My husband has also embraced the changes but I know there are certain things he misses eating. Overall, it has had a very positive effect on our lives and I no longer see it as an experiment, it’s a lifestyle.

The more I read, the more I learn about the health and environmental benefits of eating a plant based diet and this continues to fuel my enthusiasm for this as a way of life for the whole family. I am now convinced that optimising nutrition is the best thing we can all do. It might not stop the progression of my MS symptoms or take the ones I have away, but it is definitely not going to cause me any harm.  I am not sure whether I will take it any further at the moment, I am still building up my repertoire of plant based meals but I think this is something that will gradually evolve with time.

Leaving Work

In October 2013, I decided to leave my job and my career as a Physiotherapist. This is, to date, the hardest decision I have ever had to make and the most difficult decision I have ever had to go through with.

I hadn’t been happy in my job for a little while and when I was coming back to work after my maternity leave I decided that unless I could return to clinical practice I didn’t want to continue in the non-clinical role I had been doing. Perhaps deep down I knew I would leave after having Reuben, I just needed to experience how hard it was to convince myself I was making the right decision.   I am glad I went back to work and I am glad I had a go at clinical work but I am also very glad that I left when I did.

When making the decision about whether to leave or not, I knew that whatever happened I wanted to be sure that I had made the decision before my circumstances made it for me. I knew I would find it easier to come to terms with the loss of my career if I felt I had made the decision, and left because I had chosen to, rather than because I had no other choice. From the outside looking in, it may have appeared that I made a life changing decision very quickly but in reality I agonized over it. I made lists of pros and cons, lost sleep, shed tears and talked it over and over with my family. Would I regret it? Would I feel like I had given in? Was I giving in? Who was I, if not a Physiotherapist? What next?

I felt lost.

But I kept coming back to my pros and cons and realised there was no alternative. I wanted more energy so that I could enjoy the time I had with my son. I wanted less stress and more flexibility, so that when he was ill there was no question about whether I could stay at home with him when he needed me there. There would never be another morning where I would leave the house before he was awake without kissing him. That wasn’t who I was and nothing was worth missing that to me.

As horrible as it was and still is, leaving Physiotherapy is not something I regret. It was the right decision, made for all the right reasons, at the right time. Although I am sad that it had to happen at all and will always be sad that my MS ended my career, I don’t regret it and I am now starting to enjoy the benefits of having gone through with that decision.   I now have far more time and energy for everything, particularly being a Mum.

We are now able to plan our weekends and I can then plan my working week to ensure I have the energy to go out for the day or to spend quality time together. It might not sound like much but when I was working as a Physio I had to spend my weekend recovering and felt that life was passing me by. I now feel that life comes before work and I am beginning to achieve the balance that I had hoped for. Despite my problems I feel lucky to be in that position. I know a lot of people who struggle to achieve a work life balance that makes them happy and I am fortunate to have the opportunity to work for my family in order to make that possible.

Going back to work

2013 was not a good year for me.  Although it started off well, things began to change and in March I had to have an urgent MRI scan to rule out the possibility of PML. Although the scan was clear for PML, it did show new lesions in my spinal cord that were probably responsible for the symptoms I was experiencing. Despite the problems I was having with my health I went back to work in April as my maternity leave ended.

As a result of a bad relapse in 2009 I had been working in a non-clinical role within the Physiotherapy department for almost three years prior to my maternity leave, and my career had changed enormously from the one I had envisaged having. The implications of this were that the opportunities I had for progression were very limited and without returning to some clinical work I had very few choices.

I had conflicting feelings about work, whilst I loved working with familiar colleagues and utilising my knowledge of Physiotherapy, albeit in a different capacity, I found it very difficult to work in a department surrounded by people who were able to progress with their career and were promoted above me, despite a great deal less experience, purely because of my health. This caused me a great deal of unhappiness and frustration, and the only thing that kept me going was the hope that I might one day return to clinical practice.

My manager agreed that I could go back to some clinical work after my maternity leave, which I was really excited about. This was really important to me as I had pretty much decided that if I couldn’t continue with clinical work I would leave my job. Although this sounds fairly dramatic, I had finally decided that living with MS was hard enough without being reminded of everything I had lost every time I went to work. This was not a situation I wanted to continue indefinitely and so I made myself a deal that I would have a go at returning to clinical and see what happened.

Initially, things went really well and I loved getting back into my uniform again and the feeling of doing the job I had trained to do. My knowledge came back reasonably quickly and I felt a massive sense of pride at having achieved something I thought I would never do again.

Unfortunately whilst this was going on, Reuben was having a very rough ride during his first few months at nursery, and seemed to pick up every bug going.  He had chicken pox, followed by a very serious chest infection and then got hand, foot and mouth.  He was poorly for almost three whole months.

I was doing my best to juggle my work commitments, alongside being a Mum and dealing with my MS, but wasn’t coping well.  My own health deteriorated and in June I had a very nasty bout of tonsillitis, which triggered a relapse.

Looking back on this time now, almost a year on, I am not surprised I couldn’t manage everything. Being a working Mum is hard, having MS is hard, returning to clinical practice is hard. Trying to do all three things at the same time, is very hard! For those people that know me well, it will come as no surprise that I felt this was a realistic goal for myself and was disappointed that my health suffered as a result! For those that don’t know me, this tells you something of my character. I don’t regret attempting to do all of this, but in hindsight I should probably have taken a little longer to adjust to one major change in my life before heaping on any more.   I still find it hard to put my MS first and find I get tunnel vision in pursuit of a goal.  Unfortunately, this sometimes means that by ignoring my MS and living as though it doesn’t exist, I make it worse.  Once again I shall resolve to do things differently next time and be a little kinder to my body!

Catching up

I have never been particularly involved in anything to do with MS.  To be honest I have avoided it, my own dealings with the disease have been more than enough involvement at times. But over the last few months I have started to think a lot more about my MS and particularly about the benefits I have noticed since changing my diet and my lifestyle. Associated with this I have started to write again and started to wonder whether other people might be interested in what I have to say.

This bought me back to my blog, and a quick glance at the stats page showed me that there are people reading it, despite a complete lack of promotion on my part. My reluctance to promote my blog stems from my own perceptions of myself.  I can’t honestly believe that anyone will be interested in what I have to say.  The devil on my shoulder tells me that only I am interested in what I have to say and perhaps that is true, but perhaps by sharing my experiences I may help somebody else.

Nothing ventured, nothing gained. So I am just going to start writing again and see what happens. I have been writing a lot of update posts in order to fill in the gaps for the time I have been away. I intend to continue writing about my experiences of being a Mum and living with MS and the changes I have made to my life in order to cope a little better. I would love to hear from anybody who is reading. Please comment and let me know what you think.