So, the time has come. Yesterday, I took my last Tecfidera capsule and I have to say that I am actually now terrified. The reason, of course, is that it’s time to start thinking about getting pregnant again. I wonder whether anyone is ever ready for another child and it will always be scary but it is definitely worth it. I would love for Iman to have a sibling and someone to share her experiences with her. All the technicalities fly through your mind though like where will we put them, we are going to need more stuff and more space and just basically how will we manage it all? But the answer to all of that is, you just do.
When you are taking medication there is so much more planning involved. Because the effects of Tecfidera are unknown in pregnancy I’ve been so scared of accidentally getting pregnant and having to consider termination. I also have to allow for a period of time for the Tecfidera to ‘wash out’ of my system. The doctors have said two weeks should be fine but I think I will make it at least a month. I feel that last time we may not have waited long enough and that may have resulted in the miscarriage. On the plus side, with MS, when you actually do get pregnant you feel great and so I will look forward to feeling like my old self again! It really is amazing that when your pregnant your immune system is suppressed and your symptoms really do improve. I suppose there really is always something to be grateful for, it is hard having MS but at least it hasn’t taken away the one thing I’ve wanted the most in the world, having a child.
It’s going to be a challenge keeping myself well without medication but at least I know I have done it before. With drugs like Tecfidera you can’t really be guaranteed that they were actually doing anything as you may not have had a relapse anyway but it does give you a good feeling of a safety net. I now feel like a little bird pushed out of the net and I have to fly. I have learnt a lot in the last few years though about listening to my body and so I just need to do this a little more and manage my fatigue. Physiotherapy has really helped and I feel I am getting stronger and this has to be a good thing.
I do feel strange without it though, it’s become part of my routine and I have become so good at taking them. The last couple of nights when I’ve had my dinner I’ve had that feeling that I need to take my medication and then I realise I don’t have to. It feels weird but I will get used to it. It will all be worth it in the end if I can have another child. Having a miscarriage taught me that nothing is certain and there are no guarantees. You may want another child but it may not be in your story, all you can do is your best and leave the rest to destiny. So, anyway, the next few months will be all about looking after myself and preparing my body for a new beginning. There is only one way to look and that’s forward…..
For many of us when we look back at 2016 we almost wish it hadn’t happened!! It seems to have been quite a dark year for many. That’s why I have found the suggestion of putting all the good things that happen in 2017 into a jar a most refreshing one. I think that it would be much more fun to focus on all the good things that have happened that year rather than the negative. For some reason negativity seems to have a louder voice which is a shame, we should give positivity and fun a lot more emphasis than we do right now. At least I know I should and I can see it in so many people around me.
For me, 2016 has been plagued with illness all around, it seems like we hear the dreaded c word more often than we would like to. There have also been deaths, sadness and some really hard times. Even though I say this, when I actually think about it it’s been a great year because despite all of these things there have been some really good times. We’ve had celebrations, new additions into our family, wonderful family gatherings, amazing holidays, great times with friends and family and some amazing memories not to mention Iman just being in my life is the best thing of all. So actually, it hasn’t been a bad year at all! Yes there have been hardships but there’s been an awful lot of good that has come my way for which I am grateful. It all comes down to perspective and focus.
The key to it all is gratitude. To be grateful you have to focus on the good and so today I went out and bought myself a jar and some post it’s, I even treated myself to a new pen! I never really need persuading when it comes to stationery. I am actually excited for the end of this year now to reveal to myself all the many blessings that have come my way and how we have enjoyed them. This in itself will make me look at life with a much brighter view! Join me if you like….
So, it’s been a while. I’m not quite sure what happens but every time I look up from my life it seems to be Friday again. Things have been a little hectic and I would best describe my life as cloudy but it all seems to be clearing now and I feel better for a little time away from it all!
The highlight at the moment is that I got my referral for physiotherapy. I wasn’t expecting it all to come through so quickly but there you go! It’s strange because even though I agreed to give it a try it felt a little strange to be going for physio. The place that I was referred to was called the Neurological Rehabilitation Centre. That sounded far too serious for me and I felt that perhaps I may be wasting their time as I am not sure I am in need of rehabilitation, not just yet anyway! My MS doesn’t seem so bad to need rehab!
Well, it turns out I was very much in need of rehabilitation, of sorts anyway! The physio was so lovely and they look into every aspect of your life, they even ask you your hobbies! I always dread this question as I don’t seem to have any, Marc tells me that my main hobby is talking to my friends and family which is probably true! Anyway, there are worse things you could do with your spare time! She also looked at the way that I stand and walk and more importantly, my balance which was pretty appalling too! It turns out that maybe we could all do with a visit to a physiotherapist. I have more weaknesses than I thought, I was under the impression I was doing fine.
Her main concern was that I have no core muscles which I wasn’t too surprised about considering I’ve never been one for exercise. She gave me a few exercises and I have to say it’s quite refreshing to actually feel the muscles in my stomach. It feels like they are on fire! I already feel better a week later and feel that this will be the best thing for me. I now understand that your core holds you together and so you need it to stay strong, I even feel my posture improving. Next time I see my dad I think he might be proud of me if I actually manage to hold my shoulders back!
My other complaint was the pain in my ankles and this also had a simple solution. Stop wearing silly shoes! I need to get shoes with more of an in step in order for my ankles to sit correctly and for me to be able to be more comfortable. Of course, it would be nice to not have a standing job but a the moment there isn’t much I can change about that. Maybe in time!
So, all in all, it was a very fruitful experience. It just goes to show that there is an expert for everything and there is always something new to learn! It’s nice to know that there are also non medical solutions to make you feel better as well. I am actually enjoying my exercises and watch this space for the results. You never know, I may even achieve that elusive flat stomach along the way!
Yesterday I was sat at the train gates on the way to nursery cursing them when Iman suddenly gasped and was so excited to see the train go by. It made me think about how I was just thinking about how these train gates waste my time but Iman had found a new game. Now the train gates are fun for me too while we make train noises and both get excited when the train goes by. I don’t control the train gates but I can change my reaction to them. It really is the way that you look at life that counts.
It made me think about what living life through Iman’s eyes would look like and it would be wonderful. Every day is so exciting from the minute you wake up because there is always something new to learn. She achieves something new every single day and she congratulates herself accordingly as well. And the laughing, she laughs just as much at herself as she does about other things. She definitely believes that it’s her right for everything to revolve around her and she makes no apologies for it. Plus you can bring fun into every single part of your day. If she doesn’t want to do something or talk to someone, she says ‘no’ and that is that, no deliberating or agonising! Now isn’t that a wonderful life?!
The thing is, we live the exact same life as she does but we cloud it with all the grey. We sometimes don’t see new experiences as something we will overcome, we just see them as barriers that are too difficult to achieve. We bring the fear in, children don’t have time for fear! We definitely don’t congratulate ourselves enough for what we do every day and we probably apologise too much. We also have to ask ourselves how much do we do that we don’t want to, why not just say ‘no’! I know that I am guilty of most of this.
So, my new challenge to myself is that every day I will remind myself to look at life through Iman’s eyes! Even if it is for a little bit….it’s definitely a much more fun and exciting view!
Last week I finally gave in to seeing a doctor. My eyes started to go funny whilst watching TV one evening and for fear of developing optic neuritis again I thought that I would seek some medical help. It’s difficult when you see the GP as I don’t have my own GP and also they don’t often have a lot of experience in MS and what to do. Plus, half the time, I don’t really know how to describe my symptoms. How is someone going to help you when the best way that you can describe the problem is ‘my eyes don’t feel like they are my own!’
The GP was very sympathetic and listened to my symptoms and did the best she could and actually she helped me to realise that it probably wasn’t neuritis but that I was simply just tired. Sometimes it’s just nice to be told that it’s not that serious. It quietens the speed train in your mind and puts it all back into perspective. In my head I was heading straight for a relapse!
One good thing that came out of all of this is it made me realise that I haven’t had much in the way of MS care this year. I finally decided to phone the MS nurse team and find out what I could do about the fact that my nurse has left and I’m sure three months has gone by since my last blood test for Tecfidera. It’s very odd how the side effect profile presents itself as most are relatively mild but there is one side effect that is rare, but fatal. It’s quite scary and this is what drove me to chase it all up.
The result of my phone call was panic as the nurse I spoke to realised that I haven’t had a blood test for almost 5 months and on my last blood test my levels were so low someone should have considered discussing stopping treatment. She was also surprised that I haven’t seen a nurse this year which isn’t that great either. I guess I just get on with it all and don’t like to rock the boat. Maybe I should learn to shout every so often. It’s a little dangerous that I have managed to fall through the cracks of care.
It isn’t the first time though. When I was on Rebif and decided to stop to try to have a baby the neurologist then couldn’t believe that I had been injecting for five years as not many people do. I had just carried on as I thought someone would tell me to stop at some point. I suppose I am just good at following orders and not asking questions. In some ways it’s not a bad thing as it means I get on with my life and not let my MS get in the way but I also need to recognise that it is serious and I need to be cared for. I need to make myself important too. The good news is that I’ve had a blood test, I’m in the process of getting a new nurse and may even be having an MRI. Now that’s more like it!
I’ve been taking Tecfidera for almost a year now and I really haven’t got any complaints. I’ve been able to tolerate it very well and I have to say that I feel mostly well. I’m still learning to have breakfast as you have to take it with food and I think Marc is tiring of my lack of enthusiasm for breakfast. I just can’t seem to find that thing I love to eat in the morning, other than rice that is. The love of rice is in my genes!
The only thing that I have struggled with is actually taking it. This is something quite hard for me to admit considering that I am a pharmacist myself and I make a job of advising people to take their medication. I only need to take it twice a day, how hard can that be? Well, I will tell you that it’s actually really difficult. You just need to be distracted or tired or sometimes there really is no reason. I’ve tried leaving it on the table so that I remember, I even take one in my bag in case I forget before I leave home. Often Marc is really good at reminding me but he cant follow me around all the time.
As its all part of the service the delivery company phone me every month and ask me how much I have left and organise a delivery day. It’s an amazing system as of course it identifies waste straight away. I am ashamed to say that in a year I have almost missed a whole months worth! That’s terrible! When you think about missing one here and there you dont take much notice and you don’t think it’s such a big deal but actually it is!
Some patients in the pharmacy request calendar packs which means that the days of the week are on there and I used to think that they were being picky! Tecfidera has the days of the week on and I have to admit I find it really helpful and so I take it back! Most of these patients are old and so I can’t even play that card. It’s the same as the patients that used to say that the round paracetamols are hard to swallow and I used to think that they were being silly too. Until I had to take them and realised they do get stuck in your throat! So really it’s made me realise that you don’tcc know anything until you have to do it yourself. So don’t judge anyone as you may think it’s simple but you won’t know their struggle until you walk in their shoes and sometimes even the simplest of things really aren’t that simple after all.
It’s been one busy summer. There hasn’t been a dull moment and even though at times it has been tiring I really wouldn’t have it any other way. There are times when we all sit and think that maybe it would be nice if things just slowed down a little but, then, would you really? What would you do if you didn’t have people in your life? I personally think that it would be no life to live at all.
Without valuable interactions with people you will never experience all the emotions that you need to feel that you are alive. Of course, the most wonderful thing about this summer has been spending time with family. The love and contentment that you feel in your heart is priceless. Iman has thoroughly enjoyed it and, for her, it is invaluable to learn that kind of love but also to learn to share her space and her things. Every morning she has woken up with sheer excitement as to who is still in the house. My hope is that this will make her more open, loving and giving when she grows up.
There is also never a day when you don’t learn something. You learn about life, relationships, work to name a few just from being with people and talking. And, really, even a negative experience creates learning if you can process it and prepare for next time. It is also a wonderful feeling to know that you have a home to welcome people to. What would be the use of having things and never being able to share that joy with anyone? It would certainly be a lonely existence.
So, even though I have to admit I may feel a little tired and it will take us a little while to recover from all the action I will say that I have had the time of my life. I feel a warmth in my heart to have experienced it all and would like to thank everyone for a memorable summer and only hope that our lives will always blessed with people in them.
Gardening really isn’t something that I am very good at. I love my house plants and they love me but outside the house I just close my eyes and come indoors. I mean to do something about it on that one day that we all have that really never comes. I managed to find a gardener and that was my solution. The trouble with that is it is almost the same as having a cleaner, you still have to clean, they don’t do absolutely everything for you. So Marc and I made ourselves a realistic goal of attempting to do one hour a week together and see how it goes.
Today was our first day and it was great. I can’t believe that even though the gardener has started coming there was still so much to do. To be fair, the first week the grass was a nightmare and so he couldn’t really do anything else in the two hours that he is here. Anyway, we managed to pull out two whole bin bags of weeds. The best part about it is that you can actually see a difference and it’s also one less thing to worry about. I sometimes stare out of the window when I am doing the dishes and my heart sinks as I know I need to do something about the garden. But today, even though it wasn’t loads I felt proud of us instead. It is so much better to do things than to worry about them and do nothing.
Whilst I was pulling out some of the weeds, apart from forcing hundreds of ants to rehouse themselves, I finally realised why I hate gardening. When I moved into my first house here in England after university I was actually quite enthusiastic about doing the garden. One day I was tidying up at the bottom of the garden and I lifted up a brick and there was this huge toad! Well, I dropped everything, went inside the house and never attempted gardening again. Today I realised that incident seems to have put me off forever!! It’s amazing how an event can get into your subconscious and just stay there and hold you back.
Another motivation for tidying up the garden is for Iman to enjoy it. Today she had so much fun being a supervisor and it was so cute. And really, it’s not a big garden and so we don’t really have any excuse except the ones that we keep making. Now that I’ve found out that a little effort really does make all the difference, who knows, you might make a gardener out of me yet!
I know that the feeling of being tired is relative and everyone has different thresholds but I have to say that MS tired is new kind of tired. It’s really strange because I am pretty much tired all the time but I always know when the MS tired kicks in. That’s my warning sign. You feel like your eyes are going to close on you right now, you want to lie down this instant and you just need to get yourself onto a bed. Of course, with a small child, this isn’t always possible but not listening to it makes it last a little while longer.
It is helpful to know your warning signs with MS as then you can avoid sliding into a relapse which of course then causes new damage and is ultimately harder to come back from. I always know when I have overdone things and it’s time to slow down and for me, that time is now. There has been a build up of things that have contributed but sometimes I feel like it doesn’t really matter what is happening, good or bad, you are going to have down times with any chronic illness. Of course the solution is simple, take a step back and rest. So that’s what I am doing.
It’s funny though because you see the same thing happen to ‘healthy’ people and they totally ignore the warning signs because they have enjoyed good health and you feel a sense of invincibility. You never think it will happen to you, that’s just how we are. I never thought that this would happen to me, I just kept pushing and not listening to my body when it was starting to crack. Then I got really ill and the damage was already done. The trouble is, you can’t teach anyone this. You only learn when it happens to you. So my advice would be learn to listen to your warning signs before it’s too late….
I’ve been battling with my baby weight for well over a year now. I’ve done really well and actually am the lightest I have been in an awfully long time. I set a goal when I started and I have 6 pounds to go. This last six pounds has probably taken me the last six months and the scales have hardly moved.
I initially thought that maybe I was sabotaging myself. I was constantly telling everyone that I was stuck and of course that was all I ever was. I also think that I don’t have the same want as I did before because I have already lost quite a bit and this last hurdle is maybe pushing a bit too far. When you have a lot to lose you are lost more motivated. So anyway, in my Slimming World group my leader suggested doing a for and against list for myself. It is a private tool that is for your eyes only and you sit down and ask yourself all the things that are for and against your goal. The interesting thing is that it focusses on more on your attitude to the goal. So you have to break down your thought processes which I thought was a different perspective.
The for’s were quite easy and we all know why we want to be slim and how we will feel when we get there. The against is what I found a lot more enlightening. It was all the questions in my mind that reflect that you don’t really believe that you can do it. Will I really get there? Do I really want to restrict myself? If I get there, will I even stay there so what’s the point? This has made me think that with all this background negativity and questioning going on in my head without me knowing it’s no wonder I am stuck and not getting anywhere.
As always, it makes you think about everything. If your attitude in your mind isn’t focussed on the end goal, genuinely focussed, then how will you get there? You won’t is the simple answer! You will think that you are trying and you’re making an effort but if you don’t truly believe that you can do it, you really never will.
So, I’ve attempted to do a little reprogramming of my mind and funny enough I did lose weight last week and am aiming for this to continue. I am also going to think about my goals and what I want to do and make sure that my thoughts aren’t letting me down. If I can get my mind to want it, then I’m definitely going to be a winner and at the end of the day, that’s what we all want isn’t it?