March is MS awareness month! So, even though I seemed to be on a “blog-break” because I’m too busy writing my thesis, I couldn’t not stop to write a blog in honor of this important month. I decided to write something different to what I normally write, possibly because exactly a year into a pandemic, with pandemic-fatigue really kicking in, I feel I need this reminder for myself, because sometimes…I find it so easy to forget the importance of gratitude….

I’m not sure if you are aware, but there is a growing body of research which shows that there are many benefits to gratitude.  Being grateful is found to be good not only for our mental health but our physical health too. Now when said like that, it sounds a little bit overrated, doesn’t it? However, there is research that confirms this. Go ahead, feel free to look it up! So today, I chose to write about it. Some days, I can’t deny that it’s hard. But some days I remember to be grateful, and on other days I’m even grateful for this condition we call Multiple Sclerosis. Some of you might be thinking why would anyone be grateful for being sick? But it’s all a matter of perspective really. I’m not grateful for being sick, I’m grateful for what being sick has given me, what it has taught me and what it has made me.

I assure you I don’t say this lightly, in fact I still wince a little bit when I say the words grateful and MS in the same sentence, because MS has caused me lots and a lots, of grief. In fact, I think that 14 years later, countless relapses, endless pain, rivers of tears, a second autoimmune condition, missed opportunities, numerous battles, and a pandemic later (with cases increasing by the millisecond,) life feels SO HEAVY… that it proves hard to be grateful; let alone be grateful to condition that started everything. But if I consciously become aware; stop drowning in my own sorrows and instead, look up toward the sun, I know that there is a lot to be grateful for. And I hope that this blog will help you reflect and find yours.

Above all else I think I’m grateful for MS because it was an excellent teacher of life and humility. I don’t like to give full credit to my conditions, because I’d like to believe I had a little something to do with it too…but I do believe MS was a big part to becoming the person and therapist I am today….

It taught me to appreciate things I never stopped to appreciate before. Things your average person would consider mundane; but the things that really matter. Things like walking and talking which aren’t things you ever stop to think about at the age of 23 or 33. But yes, at 37, I’m grateful that I can walk, and that I can talk. I can’t run to save my life anymore, but that’s ok, I was never much of a runner anyway. I’m grateful that I can see, because MS showed me what it means to lose my eyesight; twice. I’m grateful I have enough energy to make it through the day, because I remember times when I couldn’t make it past 4pm without needing to knock out in bed or on the nearest sofa. I’m grateful I can feel the ground I walk on, because there were times when the nerves in my feet where so badly damaged that it felt like I was walking on glass and stones. This list continues, but I’ll stop here.

Then, there is friends, family and work to be grateful for. I’m grateful for the friends I consider family, because MS showed me how precious it is to have friends that show up for you, with a simple message or even at hospital, when your family can’t. I’m grateful for my son whom I can put to sleep every night because there were many years where I feared I wouldn’t be able to have children because of my health. I’m grateful for my dog who wiped (licked) my tears every time I cried. I’m grateful for my husband that allowed me to take a step back from work to recover and get better. I’m grateful that MS forced me to slow down many times, even when I didn’t want to. I’m grateful that MS made me leave a job I loved, to eventually pursue a new profession which I love even more. I’m grateful simply because MS makes me appreciate a good, fresh and sunny day like no “healthy” person ever can.

MS taught me empathy, it taught me not to judge, it taught me pain, it showed me grief, it taught me what it’s like to really feel. MS has made me more human. MS showed me that there is disease. We are not invincible….even though we may think we are, especially at a young age. But the reality is we can lose our health in a matter of seconds, just when we least expect it. I lost mine on one cold December day in Milan, in the middle of a family Christmas holiday. I got what I thought was pins and needles in my hands, but these pins and needles weren’t your average pins and needles, they were there to stay….and they were the first sign that something was awfully wrong. That, and the fact that I was so fatigued that I chose to go to my hotel room and sleep all day rather than continue shopping with my family. I remember the day like it was yesterday. What was meant to be just a normal happy day, was one that eventually changed my life forever. But today, I am grateful for everything my life has given me since then. MS reminds me to be grateful to be alive. So, during MS Awareness month I hope that you too will find something to be grateful for… and if you have MS, try find just one thing to be grateful to this condition you carry every day, because I believe that if you do, it won’t be so heavy to carry….

Feel free to share with me what you’re grateful for in the comments below, or send me a private message, you know I always love to hear from you 

Yesterday, an article went out on the Sunday Times where my friend Amy and I were interviewed about our views regarding the Covid19 vaccine and its priority list. After reading the article I was somewhat disappointed to realise that there was so much more that I wanted to say and that I’m possibly much better at writing my thoughts rather than voicing them. Can I blame MS for that? I think I can Truth be told, when I panic, my MS brain shuts down a little and I can hardly even remember my name. Does it happen to anyone else?

The call from the journalist was totally unexpected, so my thoughts and my mouth didn’t quite work in tandem that afternoon. My son was chasing me and calling me in the background and in the moment, I don’t think I mentioned half the things I really wanted to say about this matter. So, since I’m lucky enough to have a blog, where I can calmly sit down and write while my son sleeps, I’d like to explain a little bit more what I really wanted to say to the journalist that day.

Because this is what it’s really been like suffering from comorbid conditions during this pandemic and what its really been like to see every Tom Dick and Harry out there wanting to be given priority for a vaccine…

Firstly, quite frankly, it’s been shit. Definitely classified as one of the worst years of my life and I assure you the years of my life have not been easy. But the most important points I want to bring across are the following.

1. What we want is transparency to ensure that the people who are most at risk of complications, or worst still, death are in fact given priority as promised.So that is, the elderly and back to back with them, the vulnerable, and for no reason should that priority change. For obvious reasons I do understand and agree that front liners should off course fall in line with the above. I do not entirely agree however with all those who have been classified as a front liner and regretfully will be getting their vaccine before those risking death.
2. Yes, everyone’s life has changed during this pandemic to some degree, however our lives have stopped. Our lives have been instilled with fear from the day we received a letter back in March 2020 advising us to stay home because we are medically vulnerable and thus, risked serious complications if we do get Covid19.
3. Every news feature we read in recent weeks that has omitted to mention the vulnerable only amplified the fear and anxiety we have been feeling for a whole year.
4. This fear during this last year has affected my mental health in ways I can’t even begin to explain. I’m a therapist in training in my final year, with 8 years of personal therapy on my back, with tools and techniques to ground me and appease my anxieties, and still, I’ve seen my mental health deteriorate like never before, so I can’t even begin to imagine how anyone who doesn’t have these tools has been affected by this and this saddens me greatly.
5. My bubble has consisted of my husband, my son, my parents and my in-laws. And even though we were lucky enough to at least meet them, they have been equally affected by this pandemic because there are many times when I have kept them away from their grandson. Case in point right now that the numbers are out of control.
6. I have met my best friend only once since March 2020, and the reason that’s important and heartbreaking to me is because my monthly meet ups with her have always helped keep me well balanced during turbulent times. I happened to bump into her once not long ago on the very rare occasion that I was out of the house. Seeing her felt like I was seeing a ghost. I froze, and when I got past the shock, I all but burst into tears because what I wanted to do was run to her and hug her, but instead, we cautiously spoke to each other from the safe two meter distance as though we were complete strangers, not the best friends who have been through hell and back together over the last two decades.
7. I have home schooled my 4-year-old son since March 2020 and I assure you it has been no easy feat. It hasn’t been easy for me mentally nor physically, but it certainly has not been easy for him. Being kept away from his friends and from a social life that at his age should help define him and mould him. I feel like I had to make a choice between sacrificing his childhood or possibly leaving him without a mother, and I guarantee you it is a choice that torments me every day.
8. I have been lucky to be able to homeschool my son, because I have also been lucky enough to work from home. However, I know that there are other young medically vulnerable mums and dads out there who weren’t that lucky, so I can’t even begin to imagine the mental stress they’ve had to endure during this time and my heart goes out to each and every one of them.

The aim of the article was to give a voice to the vulnerable who are sadly not represented by anyone in our society, and I hope that in our little way, Amy and I have helped in doing this. When the journalist asked me how I have lived this last year, I immediately said “at home!” As though that was the worst thing that happened. But I don’t think that was the worst of it at all. The worst of it was the fear of the unknown, the anxieties and keeping my son away from everyone else. So all I can do is hope and pray that from the moment I take that vaccine, life can regain some kind of normalcy; which would mean that he can go to school again, and we can regain some sort of life that doesn’t limit us to being alone and away from the ones we have loved and cared for dearly from afar, for a whole year.

I’ve been sitting on this blog for a while now, but never came around to publishing it. The reason for this, is that I always felt this journal was a little too raw and I was worried I’d scare people from taking the medication they need. But today something changed. I spoke to a brave 24-year-old girl, recently diagnosed with MS who follows my blog.  This girl reminded me that it’s better to have information out there for people to see even if it’s scary, because it’s still better than knowing nothing at all. Which most times, is what happens with conditions like MS.

I’ll start off by saying that if you have MS and still haven’t started taking treatment then I assume you might be a little scared to start…and I want you to know that I was scared too. In fact, I was so scared and my denial so deep, that I refused to take anything for years, even after my diagnosis. I am only saying this, because I’m trying to be as honest as I can, but I am not proud, nor promoting this decision. In fact, it was a pretty bad decision from my part.

The reasons I refused treatment are more than one. Primarily there was denial, so I didn’t actually believe I needed medication. Secondly, I had read about the side effects and I was scared.  I was petrified to be exact, so I made myself believe that I was better off with relapses than any possible side effects. Then I got married and came the fact that I wanted a baby, so I refused treatment yet again, even after a very bad relapse. Many relapses later… I can tell you that these weren’t my brightest moments. Year after year, I brought up excuses with regards to why I shouldn’t start, however, those excuses wore thin after I had my son.  I couldn’t keep denying the obvious, and the obvious was that I was becoming very unwell and if I wasn’t going to make the sacrifice and brave the side effects for myself, then I was going to do it for him.  So, I did.

The first treatment they prescribed was Avonex.  If you read a little about Avonex, the side effects would scare anyone. It doesn’t help that this is only available in an injectable form, so I needed to inject my thigh muscle once a week, every week. With every injection, would come side effects for the 24 hours that followed. I’m not going into the details of all the side effects but I can tell you in brief what it was like for me. It was quite a tough night every night of the injection. I got shivers within an hour of injecting and this lasted about an hour after that.  Here we are talking about serious shivers. Chattering teeth and it wasn’t winter.  I remember one night it got so bad that I asked my husband to lie with me in bed and hold me till I fell asleep because I was scared that it wouldn’t stop.  He held me, covered me under about three blankets and eventually the shivering did stop, and I did fall asleep. The flu-like symptoms that I got the next day weren’t easy either; headaches, fatigue, fogginess, possibly slight fever. One day the pain in my thigh was so bad from the place of injection I could barely stand let alone walk. I’m not sure if its cos I injected badly or if this happens sometimes. But somehow you walk, you make yourself get by, because it’s just 24 hours and because if you have MS then you’re a fighter and so you fight, day after day, week after week and you even do it with a smile. . .

The light at the end of this tunnel is that these side effects only keep happening till your body gets used to the treatment. Eventually, these horrible weekly symptoms will in fact subside. The information I had found, said that it would last approx. 3-4 months. However, mine lasted longer. My body hadn’t gotten used to them in 5-6 months, but that’s all I can tell you about because that’s as long as I took them. After 6 months of this medication, my relapses just kept getting worse and the lesions in my brain kept increasing, so my doctors decided that this treatment wasn’t working for me and we moved onto something different.

The new medication they prescribed is Tecfidera and this is what I am still currently taking because so far, it has worked. Tecfidera comes in pill form and I need to take it every day twice a day with food (this part is tedious, because the food needs to be a substantial meal and so whether you’re hungry or not, you need to eat this substantial meal!)  Again, the side effects were scary to read about and nasty to start. Upon taking the full dose, I vomited every day, almost twice a day for a good couple of weeks. I ended up in hospital one time because I even vomited blood (it turns out this came from too much retching). This was a very scary day and a very difficult time. Eventually, I found a balance of the right things to eat to reduce the symptoms and my GP also prescribed gastrointestinal medication to help with the side effects. The pain stopped being gut wrenching and finally, weeks later and several kilos less, the vomiting stopped.  So, this too passed and here I am telling you all about it. Truth is, I still get bad days even years later. If I take the medication with a light meal, the pain returns, but by the end of the day it does subside.

So, this is a little bit of my journey, with MS treatment, but I want to remind you that yours might be different! In my case, this was it. Is it easy? No. Did it hurt? A lot. Was I scared? Yes, very, a number of times. And yet, the moral of this story is; it’s DEFINITELY better than the relapses I have had. Because the relapses come along with pain much bigger, pain that lasts longer, pain that you don’t know will ever end. Fear, not of the shivers, or vomiting, but fear that you won’t regain your eyesight, or fear that you will never walk again. So yes, for me, the fever, the vomiting, the pain, it is all worth it if it means even just one relapse less!

Since my first symptoms over a decade ago, research has advanced tremendously.  There is no cure, but we are lucky that there is a lot more treatment made available for us and if it isn’t Avonex, then it will be Tecfidera, and if it isn’t Tecfidera, then it will be something better, so work with your doctors, listen to them, go to your appointments, take the medication prescribed and do your MRIs – because yes there was a point where I didn’t even go to those, but that’s another blog all on its own.  These check-ups, with your neurologist and your GP, the medication, combined with a healthy lifestyle, a healthy mind and a lot of rest are what might make you well again if you aren’t, or keep you well if you are!

I’d really like to invite any other MSers reading this, if you agree or disagree, if your story was similar or totally different… please feel free to leave a comment, tell us your story, share it if you wish, for people that are just diagnosed or people that are in the thick of it and are looking for solace though other’s experience.

I seem to be having a bit of a writer’s block. I realise it’s been over a month that I don’t sit here and write… about MS, about life, about living with a debilitating condition or two…. And yet it’s something I think about every day nowadays, much more than I ever did in fact. Covid19 did that. The pandemic did that. 2020, with all its misfortunes, did that.

I can’t help but wonder, what’s next? When I’m stuck in life, I always take my stuckness to therapy and this time was no different. Yes, I take the simple things to therapy sometimes and five minutes in, it hit me. I finally noticed the parallel process I seem to be having between writing and my life. I wasn’t just having a writer’s block; I was having a life-block. I was stuck. I am stuck, in a mundane cycle of pandemic life. So, possibly, despite its mundanity that’s what I should be writing about, because possibly, I’m not the only one going through this.

Let me share a little bit about how I feel these days. Unfortunately, despite my best efforts, I feel sad quite a bit. Anxious quite a lot. Covid cases keep increasing and nothing is being done about it. It feels like it’s closing in, so it’s hard to manage my thoughts. The happy days that come by, are tainted. I feel well enough health-wise, though fatigue kicks in long and hard with September weather. I’m ok. I am surviving. Yes, surviving … but surely this isn’t a way to live. There’s nothing to look forward to. No weekends spent with extended family and friends. No travel plans. No Christmas parties to count down to. No looking forward to the new season. I wake up every morning and I don’t even know what day of the week it is, because it could be Monday but it could also be Saturday. I couldn’t tell, because most days feel the same anyway.

I know I am lucky, because I have the freedom to be working from home and studying from home. My son is now also doing distance learning from home. So yes, I’m lucky; but I feel like a big fat mess on some days because I’m mentally exhausted. On social media, I see people go by their daily lives, as if 2020 was just another year on their calendar… and I think I envy them, because to me it hasn’t been just another year. My life as I know it, stopped on precisely 7 March 2020. And as well as being a little bored and a little sad – which I could live with just fine, I am also a lot scared.

I still feel most people don’t understand this fear, maybe some even think its unjustified, but maybe others understand and others, at least try. So as usual, if you can relate to this even just a little bit, then I hope this helps. If you can’t, but you’re still reading, then maybe it will give you an idea of what it’s like to live on the other side of this pandemic. To live through a pandemic with two autoimmune conditions, to be scared for your life and scared that you might not make it till Christmas lunch because you might wake up one morning with a high fever and suddenly you’re just a number on the covid list. . . that off course, had “underlying health conditions!” Gosh if I read that statement one more time I might implode!

Living with this fear, every day for 7 months now, I can’t deny it’s been exhausting, not to mention traumatic. Sadly, I know trauma. I’ve been here, more than once in my life. This current trauma, takes me back to that day. The day I had an appointment with a Doctor I never met before, change my entire life. Even though the Specialist didn’t diagnose me on that first day we met. That day I knew. I knew I had MS, and I knew it was going to change my life forever and things would never be the same. I remember it clearly…the doctor sitting across from me, my mum sitting to my left and I was just there, looking blankly at him, scared, desperate to cry, but also trying my hardest to be brave and act like I could handle whatever this man was going to say to me. And this trauma brings me back to today, to the pandemic, where those of us that actually acknowledge the seriousness of it, know, that life will never be the same again. No matter how keen everyone is to “get back to normal.” Even after a vaccine. Things will just never be the same. Friendships have changed. Jobs have been lost. Families have mourned unfairly. Mannerisms will be different. 2020 will always be the year that changed our lives one way or another. So many times, I feel the same way I felt in that office, scared, desperate to cry, but trying my hardest to be brave and act like I can handle whatever 2020 throws our way!

Despite this fear, today as I write this, I choose to be brave. Because the way we choose to feel long term, is always a choice. It’s not an easy choice, especially during a pandemic, but a choice none the less. So, when I feel I’m heading in a downwards spiral, I know it’s time to use all my strength and get the hell out! One thing I like to do is remind myself, that hardships like this, as traumatic and horrible as they may be, teach us in volumes if only we let them and I dare say, can also lead to something meaningful and beautiful. So look for meaning. Find beauty. I don’t sit here speaking about trauma as though I were an expert on the subject, cos I’m not. Nor do I think that all trauma can and will lead to something beautiful; that would make me crass and stupid. But I sit here writing from a place of someone who knows trauma because she’s experienced it more than once, and I’ve also experienced doing something with it – thanks to years of therapy. To make it clear, trauma to me is primarily; injustice. Then there’s also a lot of, pain. Grief. Ptsd. Heaviness. Anxiety. Fear. Helplessness. Loss of control. But…. I also see; I choose to see… light, because the alternative would be too scary for words, and because the alternative, would mean I wouldn’t be able to do my job as a therapist.

It’s good to know that through hardships we grow, we change. We can become better people, we become mindful. Become aware of the little things. Learn to appreciate the simple things in life. It makes me appreciate something as “simple” as a stranger wearing a mask in the street. Or the true value of a friend checking in. The sweet sound of my son’s laughter. It makes me appreciate the moments just lying beside him while he sleeps. It makes me notice the stillness of the night. A good home cooked meal at the end of the day. A glass of gin just because I feel like it, not because it’s the weekend. It makes me enjoy the sunrise and a crisp morning and the air I breathe like never before. And on these days I am hopeful that when my son is older, he won’t remember how scared I was deep down inside, but he’ll remember all the time he spent with me and his dad, learning, playing, reading, cuddling, arguing and just being and maybe that’s what we all need to do right now. Just be. Focus your thoughts a little less on the fear, the future, or what others are doing, and a lot more on being alive, today; as unexciting as today may feel! Yes, I believe from sufferings, beauty can surface, if it’s worked on regularly, if we are ready, and if we let it. There can be light at the end of the long dark tunnel that is also this pandemic. So we must try and let this light in, even just a little bit every day, and in the meantime believe; this too, shall pass.

Grief comes in five stages; or so they say. Though having been through it more than once, I consider this to be a very simplistic way of looking at it. I assume many of you have heard of these stages and would therefore know, that denial is one of them. If you haven’t gone through it yourself however, you might not know that denial, can be a real bitch!

It can last for years. In my case, around 9 years. I personally believe that up to a certain extent, denial is important for our survival. It comes in many ways and forms and you probably won’t even realize you’re in denial, till well… till you realize. My denial came mostly in a deflective format, amongst other therapeutic terms I can throw at you but will spare you. Deflection is only one of the many ways humans adjust to a situation that pains them too much, or a situation they’re not comfortable with. Deflection. Avoidance. Changing the subject. Laughing when you’re meant to cry. Using sarcasm when you’re meant to be serious. Changing the topic, or keeping very busy doing something else, anything else. I was an expert in doing all of the above. . .

I lived a certain way for a long time and adjusted my ways to cope with the traumatic experience of becoming sick at a young age. I needed to grieve the 24-year-old healthy girl I was never going to be. But I chose not to do that. I escaped the situation and never mentioned it to anyone. To the point that if anyone asked if I was ok during a relapse, which didn’t happen often (out of no one’s fault but my own,) but when it did happen, I always said I was fine. I felt like I had to make myself fine, for me, but even for them – because the denial came both ways.

There are many stories I can tell you of me pretending I was fine. But I’ll write about the one that stays with me the most. The day I chose my wedding dress, I had a bad relapse and I couldn’t see very well because I had a very serious case of diplopia, or in simple terms – double vision. I was pretty much seeing two of everything. Till today, I wonder whether I’d have chosen that dress had I been well and seeing properly. My husband insists I looked magnificent but I still doubt my choice; which was rash and somewhat blinded – literally. The reason I tell you this story is to show you the extent of my denial. Because I shouldn’t have been choosing my wedding dress that day, I should have been resting. The dress could have waited a few weeks till I got better. But I kept retroflecting my needs and fought with myself pretending I was ok. The plan was to choose a dress, so I was going to choose a dress no matter how unwell I was feeling! If you had to ask me today if I’d do that all over again, I’d tell you I wouldn’t. I enjoyed shopping for my best friend’s wedding dress so much more than I did my own, and that’s just sad isn’t it. Firstly, because it’s the most expensive dress you’ll ever wear and because choosing the dress is choosing the damn dress, so ideally, you can see it well, and you’re enjoying every second, not cursing through every second.

The moral of this story is to remind you, it’s important to admit you are too unwell to do something, even if you don’t look unwell and most importantly, even if it wasn’t part of your plans to stay home. Because getting sick and staying home is never part of our plans is it. But if you don’t admit it, you might regret it; I know I do. I said earlier on that denial is important for survival; but we cannot live in survival mode forever. That’s not a healthy way to live. It’s important to become aware of our needs more than our wants, acknowledge the fact that at this time, you can’t drive, you can’t be shopping for wedding dresses or going to work, or partying the night away, possibly, you can’t even take care of your own child…I’ve been there…delegate some tasks. You need attention, so get it. Take baby steps towards acceptance and do so, for your own well-being. If what you need is to sulk in bed for a week or two, then sulk in bed for a week or three…then yes, off course, get up, be a better mum because you’ve rested, be a better dad, choose that dress, meet your friends – well since we’re going through a pandemic, ideally don’t meet too many friends or do, with social distance in mind! But in the meantime, take the time to regroup and get better.

Sick leave is there to be taken if you need it by the way, I had a tendency to forget that and felt guilty when I took it. Don’t. Taking it only means you are aware of your needs and the importance of tending to them above all else. So here goes my mantra; become aware of what you are really feeling and what your body needs at this very moment. It’s not just about you. It’s about your body too. You may sometimes feel like you’re stuck in a body that doesn’t or shouldn’t belong to you. But it does doesn’t it. And we should treat it with love and respect, the same love and respect we’d show a friend if they were sick, yet we find it so hard to show this love to ourselves sometimes. This awareness, is key to helping you move on from denial. Awareness will slowly lead to acceptance, and I believe acceptance is what will become your real strength.

I’m going to end today’s journal somewhat differently. I’m going to share with you a few tips that have helped me get to the place I am today…..so if you suffer from MS but even if you don’t, please take from these what you wish

• Breathe. Its elementary isn’t it? But sometimes we forget. Breathe deep breaths whenever it all gets a little too much.
• Find a good neurologist. One you like and one you trust. If you don’t, don’t be scared to change. This person will be important in your life whether you like it or not and I know you don’t like it, so ideally, at the very least, you actually like them.
• Find a GP that’s as amazing as mine. One that can take you through all the questions you may have and guide you through every routine blood test you have to take for the rest of your life (if you’re on disease modifying drugs.)
• Find a good psychotherapist. One you trust blindly and like just as much as you like the two persons above … or a little bit more
• Tell a friend. Or a stranger. Just tell as many people as you need to tell to make it ok.
• Everything you read isn’t bible. Do your research, but don’t drown in it.
• With this research in mind, eat well if you want to but not because you have MS; but because apparently, we are what we eat, so I guess it’s fine to be Mc Donald’s on some days, but it’s also great to be an avocado on other days!
• Go for a walk. Meditate. Do yoga. Pray. Or do none of the above, but do something that makes you feel at peace with yourself at the end of the day.
• Cry. But don’t do it alone.
• Things will never be the same, but they don’t need to be…create your new same, one where resilience is at the top of the list of every day.
• Smile, because you want to, but not because you have to.
• Love yourself AND your sick body no matter what.
• Know, it’s going to be ok.

Do you ever think you’re weak because you’re sick? Think again…. Welcome to the strongest you that you’ve ever been!

If you’re not there yet, be patient. You will…. A new life will begin with acceptance. Look forward to it.

By now, those of you that read my blogs know a few facts about me. You know that I’m a 36-year-old mum, a psychotherapist in training, and I suffer from MS. What you don’t yet know is that I have a second autoimmune condition called Palindromic Rheumatoid Arthritis and today I’m angry, I’m livid. I’m sad and disheartened by what’s happening in our country.

I’m not sure this blog will make any difference at all…. to anyone… or to the current situation but I’ll write it anyway, because my heart is breaking. It hurts so badly right now I’m not sure I can put into words the way I feel. But I’ll try do that while I try not to cry. If I had to describe my sadness and fear in the same way we ask our clients to do in therapy, I’d tell you the sadness is in my chest, it’s pitch black, it’s deep, it’s scary, and there is no way out of it.

Despite my conditions, I lived a good enough life till Covid19. However now, my medications, especially both together, put me at risk. Basically, the risk of hospitalization is high and complications just as high. So, you can only imagine the way I feel right now. If I log onto social media or any of the local news portals, I see chaos, and I see a government making a mockery of this virus. Worst still, I see a government saying nothing at all….all while cases keep increasing and sheer panic and frenzy hits this rock.

In a matter of days, I feel that once again, my ground is shaken. It was happening. The infamous second wave we’ve all spoken about, the second wave that I believe we were sarcastically told was only found in the sea. Yet the reality is, we knew this was bound to happen despite everyone’s best efforts a few months ago…. because it’s been made pretty clear to me that the virus is a war we cannot win, unless we have a vaccine, so it saddens me that our nation’s government thought otherwise.   It saddens me that the public was told that we had won this war when to me we obviously hadn’t. We aren’t stronger than nature. Stronger than God. We are human, we are vulnerable, each and every one of us. So undoubtedly, we also all make mistakes, but I hope that we as a nation realize the mistakes we are making and stop putting lives at risk, over the financial gain of a few. We will all survive if we spend one damn summer not partying the nights away or getting on a damn plane to travel the world. But we won’t all survive if we keep up this attitude. How spoilt have we become? How selfish? This road will lead to families being broken. It will lead to death. To nationwide fear, anxiety and trauma. The economy will not thrive as is being claimed. The economy will fail. Jobs will be lost because people will get sick, mentally and physically and their families need to care for them. . . or worse, cry for them.

I’m so tired. The thoughts are exhausting. Social media has become exhausting. So once again, when I feel like I’m panicking, I go back to my teachings and I try find the ground I’ve lost. I focus on what I can control and sadly I cannot control the government nor the parties, nor the travellers, but I can control my thoughts and how I’m going to live in the near future, how I’m going to live today under the new circumstances … and today, I choose hope! I chose to live as best as I can. I know that I need to take care, of myself as well as my family, so I need to be vigilant. I might sound like a broken record because I’ve said it before and I seem to always end my Covid related journals on the same note. But I can be vigilant, by wearing my fucking mask, to pretty much everywhere that isn’t my house, and I wash my damn hands every time I can… and I hope that, will be enough. I will not be locking down this time, it’s not mentally or financially feasible for us to do that, but I will be careful where to go, what to touch, who to meet. I will be creating a social bubble with a few closest and dearest, that are being careful like me, and I will hope and trust that God has a bigger plan….because we sure as hell don’t!

Making it alive to the end of the year and beyond is not something I worried about. But logic and reason make me realise that I didn’t simply because I forgot. We were so consumed by our fast-paced life that we just forgot we could die tomorrow. We took so much for granted, including remaining alive till next month or next year. But it isn’t is it. It never was. I more than anyone, should know that because I’ve been thrown a few curve balls along the way. I think that remembering this, remembering our humanity, isn’t possibly the worst thing that can happen. Because from this place we are humbled, or at least some of us are, and we are reminded that we aren’t invincible. We are reminded to be careful, to appreciate each and every day and to appreciate our families and friends, because in the end, that’s what matters.

In the meantime, we should also continue to hope that the mistakes we make as a nation will be smaller than those made thus far. We hope that we are still in time to contain this virus and we realize, as intelligent human beings and as a community, that together, we do not need the authorities to tell us what to do….we can decide that all on our own. We retract, out of our own free will, we take one or two steps back, and take at least some of the precautions, and make some of the sacrifices we were wise enough to make just a couple of months ago…. because that, is the only way we can really win this war. It is clear now that 2020 will be a part of history; whether we make Malta’s history a good one, depends on each and every one of us. Hope, they say is the last thing that dies, and I’ll be holding on to it, for as long as I can.

When a person is physically unwell, possibly suffers from a chronic condition or faces physical challenges…. there’s medicine which can help, but sometimes, it just doesn’t.  Even when taking a best-case scenario, and assuming medicine does help treat some or all of your physical symptoms, what medicine cannot do…. is heal your soul.  What medicine cannot do, is teach a person how to live with the burdens and challenges of life. Or Teach a person how to deal with the nightmares, the fear, the worries, and thoughts that fill your mind with sorrow.  From personal experience however, I can say that what does help with all of that, is therapy. In my case specifically, it was Gestalt Therapy.

I firmly believe that our mental and physical health are in some way connected. Yet the healthcare systems around the world have treated them separately for a long time and still do so today. Sadly, this continues to help play a role in mental health stigma, especially in Malta.  For this reason, I think it’s even more vital for us to speak about this connection and I can start by speaking about some of my own experiences.

I can say, that the more my physical health deteriorated during my early years of MS, the more my mental health was affected, and both situations needed to be tackled in tandem for me to get to the healthy place I am today. Similarly, the situation has happened in reverse.  The more my mental health suffered during the chaos of this pandemic, the more physical problems I experienced. I somehow see this connection comparable to the chicken and egg scenario. It’s not always entirely clear which comes first, and possibly the answer isn’t always the same, but they are definitely connected and we are fools if we can’t see that. We are even bigger fools if we see it but choose not to accept it and continue to treat them as two separate entities, by giving one, more importance than the other. . .

At the age of 23 when I got my first physical symptoms that eventually led to my MS diagnosis, I didn’t know about this connection, because no one had educated me about it. Because in school they taught me maths and physics, biology and PSD, however, back then, we didn’t have a therapist or counsellor in school for mental and emotional support. Thankfully, this is now changing. Likewise, when I was given my life-changing diagnosis, not one person at hospital asked me whether I felt the need to speak to someone like a therapist or counsellor to help process this news and soften the blow. Sadly, from what I’m told, this hasn’t changed to date.  So, I’m here telling you about this connection, in case you do have MS, or any other debilitating condition and no one has bothered to tell you that this might at some point impinge on your mental health, if you don’t take care of it! When and if it does…please, speak to someone. The same way you did the minute you felt numbness, or tingling in your hands, fingers or feet, or the first time you experienced loss of vision, because the two, are equally important.

I’ll tell you a bit about the road that eventually led me to therapy.  I remember clearly that in spite of the devastating news, at the time, I thought I was and felt invincible. Yet today, from this place, I look back and all I see is emptiness the size of a big black hole. I remember being in a place where the acceptance of my condition, wasn’t an option.  Back then I felt that no one would accept or love me because of it. No one would choose to be with the 23-year-old “sick” person when they could choose a healthy one (I was wrong by the way!). So, I deflected, I pretended it wasn’t happening, to a point where I numbed myself from the reality of this diagnosis and from everything else as well.  I thought that managing to pretend I was ok, in spite of everything, made me very strong, and partly I’ll admit, it did. Thanks to this numbness I could cope for years. I threw myself into work and I was always out and about. I tried to look as fine and as “normal” as I possibly could from the outside. But eventually, this is what broke me from the inside. Because how long can we pretend for? How long can we remain numb without causing further damage? Knowing that further damage, normally means self-harm.

One day, all these appearances came crushing down. I started to feel.  All of it. I don’t remember what happened but I was suddenly too tired of pretending I was strong, and for a moment there, I felt like I was going to lose my mind. Then, I reached out, to a friend, a fellow warrior, who was stunned at first, because like I’ve said before, most people around me, did not know about my diagnosis.  It is she that back then, now 8 years ago, recommended I see a therapist. The same therapist I owe most of this journey to and that’s how this all began.

The journey has been a long one. A changing one. An expensive one too if I must be completely honest, but I’d spend it all again in a second; because I need my therapist as much as I need my doctors in order to stay healthy, and you can’t put a cost on your health. My doctors treat my symptoms, with medication. My therapist heals my mind by showing me how to get a hold on my complex brain! Therapy, makes my soul feel understood. Therapy, taught me how to bring my worrisome thoughts, to the “here and now.” Which means, it taught me how to be in this very moment, despite everything else that might be happening in the future, be it a minute or a year from now. And in this moment…I write this blog, my son sleeps beside me, and all is well.

Yes, we’re going through a pandemic. Yes, the political and economic situation in our country is unstable to say the least. 2020 seems to be the year that can’t get more surreal if it tried – on a lot of fronts. It definitely showed us that we really have no idea what’s going to happen tomorrow; God forbid anything happened to Netflix at this point! But the idea is, that in the middle of all this unknown, I have this peaceful moment. I breathe and I get in touch with my senses. I can see my son sleeping peacefully, I hear the sound of silence and the tapping of my keyboard. I stop typing for a second and touch his face, and even though this moment is still the same 2020, with its many unanswered questions and problems; I have the strength and awareness to be here, where I am simply thankful and blessed to be alive.

Therapy, saved my life; and that’s the honest truth. It not only gave me a second chance at life, but a better life, filled with life tools I did not and could not have had before. Gestalt therapy for me is exactly that. A tool, that shines a light, leading the way through darkness that you cannot get past on your own. It does so, by means of awareness and connection, two things most of us struggle with – especially in this fast paced, cyber induced life we live in. Many times, all we need to do is talk. Talk about what we’re secretly thinking when we’re alone, and what we need when we do talk, is others to really listen, which regretfully, is a very rare trait in humanity.  Our souls look for understanding, our soul craves acceptance, it craves for someone to see us for who we really are as a whole, without question and judgement – because we sure as hell judge ourselves enough already! In therapy I found someone who sees me, with all my flaws, my sins, my traumas and imperfections, I found understanding, and I finally learnt that with these imperfections, I am still worthy, and it is exactly these imperfections that make me human. More precisely, the human I am today, which I now like to believe, isn’t half bad after all!

For those of you that are interested to learn a bit more about what I’m saying and what therapy actually involves (which is not necessarily what you see in the movies ) … Feel free to get in touch with me, ask any questions you have and I will be sure to answer all of them in one of my next blogs.

“What is it like to become a mum with MS?” “Should a woman with MS have a child?”

These are just a couple of questions I am pretty sure any woman diagnosed with MS, or any other debilitating disease, has asked herself at some point or another.  And my honest answer is, if you are one of the lucky ones to be granted the blessing of bearing children, then don’t let MS stop you.

What is it like though? I’m the first to tell you, it isn’t easy. If your story is anything like mine, there will be moments where you will struggle. However… don’t all mums struggle at some point for some reason? Moreover… no mum knows what the future holds, no mum knows if she’s going to get sick at some point along the way and struggle to care for her child. That doesn’t stop them from having children, they choose hope, so why shouldn’t an MS sufferer be allowed to choose hope too?!

None of my doctors ever discouraged me from having a child, however I do know, some doctors don’t encourage it, and I also knew that becoming a mum with MS would come at a price. Anyone that knows anything about MS will tell you this, and I am telling you the same. However, I am also telling you, it is a price I was willing to pay and will never, regret paying, albeit the pain that came along with it.

When I became pregnant – and that journey wasn’t an easy one – it was a dream come true…and it was a dream I could enjoy, because I was finally, relapse free. So, there was a point where I believed I could do it all; be a mum, keep my job, go on play-dates, get the shopping done, prepare a warm dinner for myself and my husband every evening, have a clean house, oh and stay sane. Complete and utter bull. I obviously hadn’t reached acceptance of my condition at this point, because if I had, I’d know that was impossible. But I did, for a while believe and hope I could, because us women, think we can do it all. And well, partly we can, but partly we can’t. Because 3 months after I gave birth, the mother of all relapses came along and broke me down, inside and out and I can assure you, what I did, is the opposite of what I had planned.

If I must be completely honest; the first year of my son’s life, was probably the worst of mine – and it hurts me greatly to admit that. But the pain I was in, my goodness, the exhaustion, I have never experienced anything like it. Every mum is exhausted in the first few months of her child’s birth, pair that, with an autoimmune disease, with one of its main symptoms being fatigue and well, you get a very, very, very, exhausted woman striving very, hard to keep it together.  The exhaustion itself literally hurt my brain, it hurt my eyes it just hurt everywhere. The brain fog. The numbness in parts of my body that should never, ever be numb. The physical ache, if anyone just grazed my skin.  And the extent of it… months passed and I couldn’t get better. This is probably also because the medication I was on at the time, unfortunately, wasn’t working.

It was so consuming that more than once, after finally managing to put my son to sleep, I stood alone, looking out of the kitchen window, and truly believed that not waking up the next morning, would be easier; better……. And the reality is, that easier it would have probably been. But better? No! I was sure about that. Now I had him and seeing him grow, was the reason I had to stay alive, it was the reason I had to keep fighting, the reason I wanted to keep fighting!

I couldn’t keep up with both work and my son, it was just too hard.  I silently prayed that my mum would come over after work because I couldn’t take care of him on my own. I cancelled most of the play dates I made with friends because I did not have the strength nor the will to go and eventually, I stopped planning dates all together. We ate out of take-out boxes every night 5 times a week and all I wanted to do was cry and sleep. So, was this the life I wanted for me and my family? Is this why I had him? To watch him grow from a distance because I was too tired to actually care for him?

The answer was simple; No. Even though I admit, it didn’t feel like a simple decision at the time, and it took a lot of therapy to get there. But I slowly became aware that there were changes that needed to be done. I’m not writing this blog to tell every woman suffering and struggling from an autoimmune disease, to leave their job just because that’s what I did.  Far from it! Everyone’s situation is different, everyone’s symptoms are different. In my case, this is what it took to get better at the time and in the end, we made ends meet. In the meantime, I’m now studying, and working again on my own terms, at my own pace. So what I AM saying is, listen to your body.

I firmly believe that at times, we have to be our own best doctor – without taking anything away from my marvellous doctors What are you feeling right now? What is your body telling you? Whether you are a woman struggling to get pregnant, a struggling mum with a disability, or just a mum juggling everything and beyond, especially during Covid19, the message is always the same.  Listen to your body a little bit more. In Gestalt therapy, we use the body quite a lot when we work with our clients. Most times, it’s trying to tell us something but we choose to ignore it. We deflect, we swallow our hurt and we move on because that’s what we do. But learn to know your limitations. I personally think all women are super heroes just by becoming mums; but be aware, we aren’t superhuman! We need to take care of us, before we take care of our little ones, so stop, think and realise what you need to do to get there. Reach out to your support systems! Call your friend, drink a glass of wine, and cry. Then, sleep. Then, take the decisions you need to take, make the changes you need to make. Get help. Take a break. Find time to rest and regroup because after that, things always look a little different, a little lighter, a little brighter.  That’s what I did to get better and that’s what I still do from time to time when things get rough again. We tend fall into old patterns, we find the right medication, we get well, life happens and so once again we believe we can do it all, but our body reminds us. Just listen.

I end on a note for those aspiring mums that are suffering and scared; Please Know, that despite the fear and the pain that I mention, four years down the line I wouldn’t have it any other way.  So if like me, you want to have children more than anything, despite MS, despite any other disease you might have; if you can, and if your doctors agree, then go for it, and if your doctors don’t agree, then get a second opinion. No woman should be deprived of this miracle if that is what she wants for herself. However, yes, also know that it isn’t easy, know that there are sacrifices and changes you will need to make; however, this is no different to sacrifices other mums make. So, the final question begs, would I do it all over again even if I knew all the pain and struggles ahead? Yes, yes I would have, but I think it might have helped me knowing, that I would have lost parts of me too along the way; and that, is the reason I wrote this blog. But please remember, this is my story, my journal, and yours doesn’t have to be the same, though it might….and you might relate.

I have been drafting this blog post since Sunday, and I have changed it every day since. Unfortunately, this is all due to the very confusing “advice” that has been sent out to the general public (in a rather embarrassing manner) regarding “vulnerable” persons during this time. I was so proud of Malta and the way we were handling the pandemic from the very beginning, it’s sad that it ended on such a disappointing note. I want to make it clear that this isn’t in any way a political post. Anyone that knows me, can tell you that I don’t share many opinions when it comes to Maltese politics and I’m not about to start now. I vote because it’s my right and duty to vote and that’s where that ends. However, this is the reality of the situation, and it’s a situation that cannot be defended from where I’m sitting.

I debated for long between me and myself, regarding what I was going to say following the final announcement….there was a point where I considered avoiding the subject all together, for the fear of upsetting some people, or saying the wrong thing, but I didn’t think that was fair. I decided that there was something important that I needed to address above anything else and it’s something we all need to realise. I decided that it’s important to keep in mind that albeit us being vulnerable, albeit being sufferers, but even more so if you aren’t, each of our journeys in relation to this pandemic, as from today, is going to be a different one; much more than ever before. Some of us work some of us don’t, some of us can telework some of us cannot, some of us can afford to stay home some of us cannot, some of us are happy to be “allowed” back out but some of us are not, some of us have the Union’s backing and some of us do not. But despite our situations being different, I don’t think it’s been easy for anyone, and I wanted to let you all know that I see you and I wish to help with the pains and fears you’re struggling with from which ever situation you are reading this.

I am one of the ones that doesn’t need to go back to work, because I’m not working at the moment. But despite not needing to go into work myself today, I’m still struggling. I’m struggling, because firstly, I’m still trying to piece it all together and I’m also trying hard to make peace with the fact that even though I don’t need to go back to work, my husband will soon be going back to an office with 80 people and in so doing, bring home with him all the unwanted and feared germs that I have carefully and diligently kept out of the house for 12 weeks. Honestly, I’m not sure I’m ready. Because what certain people out there don’t seem to (or care to) realise is that our “vulnerability” doesn’t go away, just because we have to save the economy or people’s jobs, even though yes, I do understand the importance of that too. But I’m still very scared; this is “just” my life we are talking about after all.

How am I going to survive living like this? Living with all this anxiety as I enter this new unknown.  At first, I don’t know. At first, I feel helpless again, I cry and I doubt everything, I doubt, even the idea of having launched this blog. Because how am I going to help people out there, if on some days I can’t even help myself in spite of all my training. Then, I breathe. I ground myself and I make a choice to act. I remembered what a good friend told me just a few weeks ago… something I already knew but in the thick of all the fear had forgotten. I’m not just a warrior, I am a survivor. Despite all that I’ve been through, despite all that you’ve been through; we have survived! It was no easy feat and most likely we’re all a little bruised and tattered, but here we are, body and soul, we have managed to survive. So, what we need to do when we feel confused, when we feel scared, and it’s all just a little too much too soon, is stop … and look deep within ourselves for that inner strength and remind ourselves of the resilience that we’ve always had.  We have to believe, that no matter what happens at this point, somehow, we will survive this one too, because we are made that way, and we are strong that way!

The reality is, we cannot control whether or not we will ever test positive for Covid19, nor can we control the possibility of a second wave, but we can control our thoughts and our mind. Let’s not let our mind control us.  Because, from that place, there is nothing left to do but give up and we cannot give up, surely not now. We might still be somewhat vulnerable at this stage of our journey, but we aren’t victims, so let’s not let our mind make us so.

Covid19 might be “behind us” according to some, but the truth of the matter is that it might not, so let’s keep taking all the precautions we need to take, let’s keep taking care of ourselves and our mental health even more, in front of all these uncertainties. We focus on what we can control. We eat well if we can afford it, we exercise if we can, we meditate if we know how, we pray if we believe, we trust in something bigger than us, we go to therapy or call a friend or a helpline. We reach out, we wash our damn hands, we keep those masks on and we tell everyone we know going out to wear a mask or a face shield and to wash their hands too. The fear will never entirely go away and I can’t take that fear away from you or from myself just by writing this blog. But we can try keep this fear at bay by keeping the reality of the situation in our minds. And the reality of today is; things seem to be better right now, but even more importantly, we are strong enough to get through this no matter our situations. We are fighters. We are survivors. So, we keep going, we hang in there till this virus really does disappear or that vaccine is out and we can add Covid19 as just another battle we bravely fought, and survived; and this one, we can say we’ve survived together.