Try it to know. Open your mind to try.
Please watch this…episodes are availabe for 24hours at a time:
I have never been very consistent with exercise or worked my way up to a level of fitness. I walked up Machu Picchu with a couple of friends and other, much more experienced walkers, over the course of 3 days and in a pair of not very sensible skater trainers I had just bought. I always just started new sports suddenly, working out for the amount of time I aimed to reach from day one, without any aches or discomfort afterwards. I guess that’s what being in your 20s is all about.
Similarly I remember that when I noticed my first symptoms of MS I had suddenly begun cycling to and from work (about 3 hours a day) with no previous build up or training – after years of not having cycled everyday/ for more than 20minutes at a time. First I had some vague vision problems in my right eye that seemed to resolve themselves before I got to see an optician. I was a hypochondriac at the time, so I saw one within two days of the onset of the symptom. A few weeks later, a strange and constant (over 3 weeks) pins and needles sensation in both my legs made me see my GP and then a neurologist. But even with that strange feeling in my legs, I pushed through and carried on cycling.
About 2 years ago, as a result of lower back and hip pain I stopped swimming and cycling against my better judgement and giving in to my strong lazy gene. My back is much better but the last six months or so I have been unsuccessful in trying to get back into sport. I start up at the same intensity I used to practice at, expecting to be at the level I used to be at before I stopped. So from no swimming at all for two years, I would start to swim three times a day again, knock myself out, need to rest then do the same thing all over again and again. Even when the wise advice to build up slowly was shared with me – I understood: swim once this week, twice next week and three times the week after that. Well as you have probably guessed, that didn’t really work!
It looks though, like I have finally begun to make progress rather than maintaining or worsening my condition. I finally seem to be accepting the fact that any exercise needs to be increased very slowly, but also maintained as I go. So, although it felt ridiculous at first, I can now see that increasing yoga poses -by one second a week (!!!!) is the way to go. With cycling it has been slightly more, but only very slightly – I am talking one-five minutes extra a week…So at this point I have been doing 4 minutes on the cross trainer per week for the last 2 weeks…and intend to increase to two 4 minute sessions a week this week – maybe – if I feel energetic enough. With yoga, I work through a set of poses everyday and increase the length of time I hold a difficult pose such as warrior 1; for about one or two seconds longer – each week. So last week I held each stage of warrior 1 for 10 seconds, and this week I increased it to 11 seconds. No lie. That is how gradual this needs to be for me. I now have an electric bike to it is pedal assisted and means I am not yet dealing with hills. Yesterday I did about ten minutes though as I was tired – it is important also to rest when you need to.
It is the same with walking – I am not going on a long walk until I reach that distance in my daily walking…but I am trying to walk every day to maintain the little I can so far do. It’s all about the long game….and so gradual baby steps, but maintained baby steps.
Finally though, instead of feeling exhausted after an exercise session, I am starting to feel energized!
Every year it’s the same. It’s getting boring now. You do too much – just one more thing – just one more and then I’ll rest – just this and then day off – and, before you know it, you can’t do anything anymore, for the next two or even three months. Sound familiar? You go to a wedding, to your boyfriend’s gig, to a baby shower. You’re doing loads, you feel like you again. Nothing crazy, no out-til-6am like the good old days; but maybe until midnight (woohooo) twice in a row (uh-oh). Two places to go in a day – MS Action (home for lunch) then to my sister’s house. Exhausting. Seriously. That’s how it is. I’m feeling tired just thinking about it, (right n0w it’s 8.30 and I’m ready for bed, teeth are clean and at 9 I will be in bed, I assure you. (I will probably finish this post tomorrow.)
As I was saying, you go to a wedding, do the shopping, work on your project. Go to a funeral. For me, grief is definitely the straw that breaks the camel’s back (fav expression of a friend I used to have). How can I describe it? Sadness is heavy. It is a load everyone struggles with. It is something you let yourself give into, in the moment, you stay in it a while longer than your body is telling you you can.
I have been thinking about this relapse problem. I need to learn my lesson, and slow down – especially in winter, when my body is weaker. I need to break the chain, and I am determined not to relapse next year. I will lay low and sit this one out as I must, but next winter I will take it easy until the weather gets warmer, and hopefully, I won’t relapse.
Here’s an interesting article about using an electrical shock to the tongue to help alleviate MS symptoms:
Friends and family have always been important to me, but this year’s spring clean has also involved filtering out harmful relationships. I am very lucky; most of my friends have been extremely supportive of my decision to treat my MS without the use of steroids or disease modifying drugs. One of these friends is a doctor who prescribes allopathic medicine on a daily basis. She is one of the most open-minded people I know. She has never treated my anti-drugs attitude with an ounce of doubt, she sees that I believe 100% in what I am doing and so she is supportive of my decision. She is training to be a GP and I am so pleased for the lucky patients she will soon treat. There are other people in my life who have been much less supportive.
Being over-sensitive is one thing – and a thing that many people with MS have in common (if this is something you need to work on I highly recommend reading A New Earth by Eckhart Tolle)- but having worked on this personally, I find I am much less offended now by things that people say. What I am talking about here is not over-sensitivity on the part of the person with MS, but negativity directed onto them by other people.
Some people are blinded by the system we live in. People who work hard everyday have reason to be critical of people who are able to work and choose rather to claim benefits. However, whatever the government and the ‘free’ press want you to believe; these people are a minority, and there are many people fighting chronic illness who need to work part-time or not at all in order to manage their condition. When the Job Centre decided that my fluctuating long-term condition did not mean I was not fit to work fulltime, one friend rejoiced, claiming this was a sign of my obvious good health (!) I have also had several friends who were critical of my natural approach to treating my MS. These people are dangerous for anyone suffering from a chronic illness, and these are the kind of people that we need to filter out of our lives.
Another source of negativity is that of people who do not approve of me taking responsibility for my illness, researching ways to manage it naturally and being disciplined in my endeavour to regain my health. A person I know who also has MS told me to “live a little!” when I refused to eat some chocolate cake (!) This was very funny to me; as I am following a diet specifically in order to continue living, and I hope “a lot” (!) but such is the behaviour of others who wish not to make themselves responsible for their own health. It is a personal decision; each person needs to make it for themselves.
MS is a challenge, it needs to be approached positively, and I decided, that if I am to succeed in my natural treatment of it; any negative influence in my life needs to be removed. It is nice to have childhood friends around, but not if their snide comments and mind games interfere with your healing process. One of these such friends snapped at me when I tried to defend her boyfriend in a discussion over him not being a professional, because he was working on an artistic project that did not generate much income. To me the sound of this guy’s creative dream was of great value and I tried to stand up for him but as a result was called unprofessional myself because I was working part-time. With friends like these…all the energy I invest into my health is undermined.
And so the process of de-cluttering began last winter, in the anticipation of spring. It has expanded into family life too, which has provided great relief. When family members are un-supportive or a source of stress or anguish the friction their words, actions or expectations bring to your life is just not worth it. So I have put one family member in their place, and where this was difficult to do, distanced myself from others. All of this has provided great relief and left me feeling unburdened.
Why should people expect you to do things for them because you have more ‘time’ or, if you do not work as much as they do, judge you as lazy? MS is a chronic illness, to manage it successfully you need to learn to manage stress – and remove unnecessary worries and tension from your life. Criticism, even when unspoken is felt and is very unhelpful. Things that other people have no trouble doing are not always as easy to do for someone with MS, no matter how ‘well’ they look. Chronic fatigue and brain fog are very common, as are many other invisible symptoms that people with MS deal with on a day-to-day basis. Anyway, I find that when people are critical and counterproductive in this way; it is that they are unsatisfied with their own way of living; they are only harming themselves. Distance yourself from that negative energy, it can only harm you.
In Judy Garner’s book (an essential read for anyone with MS), there is a section on relationships which talks about how MS cannot be walked out on by people who have it, but can by their partners. I am lucky to have a very understanding partner. But am aware that not everyone does. If you have MS and your partner or friends are un-supportive; you have great reason to let them go and start afresh. They will only hold you back, and may impede your recovery. MS is a journey, let it take you where you want to go, do not let others stop you achieving your goals – no matter how long they’ve been your friend, no matter how much they may need you; friendship is a two-way street. No one has the right expect anything from you. You alone can decide what you should do with your life; a stress-free life style with plenty of rest and exercise is the way forwards. It is great to have big plans. Recover your health first so that you are fully able to make them happen, leave the unhelpful people behind.
June? Already??!! We are half way through 2014, and I was asked to reflect on it, but do find it a strange time of year to already be doing so. Usually June is busy, not reflective. By June we are all fixed in our routines, and (in Britain at least) dreaming of the promised sunshine. Thinking back on the year gone by usually happens for me all of a sudden somewhere in the middle of November. Now that I think of it, this always happens in November, I don’t really know why. Perhaps because the end of the year is looming and I am thinking about all the things I didn’t quite get round to doing. Looking back through my diaries I can see several ‘November Again’ entries. It is always November that gets me. But perhaps it isn’t a bad idea to look back on the first half of the year, now; that we still have a 6-month-shot at carrying out any plans we had in the New Year.
Now that I look back on the first half of 2014, I realise that something important has changed this year. Something important that I might not have been able to place in time had I not looked back until my customary November panic. As I sit at my desk writing, I am aware of a scruffy list I have placed on top of a messy, and surprisingly high, pile of other lists. In the past, my endless lists, (which are nothing new) would have been a reason to stop writing and get back to work as it were, running and completing errands; reasserting goals, making them more realistic…if not crossing them out altogether! As I sit and reflect on the last six months, I realise that this year has been a bit different to the last few. Although it has raced by, like the last five years or so; faster even, I have felt able to do things in my own time, and for once, not been getting annoyed at myself for not fulfilling my January, February, April goals on time.
Since my diagnosis with Multiple Sclerosis in late 2009, my perception of time has been constantly changing. At first, it was all about doing as much as I could in the time I had left – MS kind of reminded me that we are not here forever. I sort of panicked and decided I needed to focus on things I really wanted to do. I started learning German, took up drawing lessons, learnt to use a sewing machine, really got into yoga, took up the bass guitar, started singing lessons, decided to write a book, all this on top of a new healthy lifestyle, all at roughly the same time (!) Soon I started to work as a teacher full-time, and still had most of these other plans in the back of my mind, picking up one then the other on weekends or holidays and after hours of marking homework!
MS has been a wonderful eye-opener. Although initially I rushed in all directions trying to do everything, it has also made me learn to enjoy the moment, and to reject unnecessary stress and distress. And, gradually, as I have learnt to maintain my health – both physical and mental, it has also made me realise that if I am going to live well for as long as I can, I need to slow down when I have symptoms/relapses – or rather, before they begin at all.
2014, for me has been putting this last, important realisation, into practice. I have lots of goals and lots of things I was expecting to have started this year, that I have not yet been able to. But there is one thing that has really started to change; I have slowed down, and learnt to stop when I need to rest, before reaching the point of no return, the point I always reach; where I have overdone things, again. This, for me, has been a tremendous achievement, and I am working each day to remind myself, that although time is whizzing away, there is no point in doing everything, if it eventually means I will reach a point where I can no longer do anything anymore. I am also very pleased to have stopped like this; mid-year, to notice this change, which I have known for some time now; was a necessary one.
A close friend of mine turned 30 this year, and as I thought about useful things to tell her in this significant year; the year that I too will turn 30; I came across a very wise piece of advice for 30-somethings: You can’t have everything; Focus On Doing a Few Things Really Well. This made a lot of sense to me. Instead of spreading yourself thinly, trying a bit of everything; the key is to try to do fewer things, well, in-depth and whole heartedly.
I feel like the universe has been trying to tell me this since the death of both of my grandmas in late 2013. When my grandmothers of 95 and 89 who had lived 4456 KM away from one another their entire lives, never meeting; died within a month of each other; I felt they were both sending me the same message: that I am not going to live forever, that no one is immortal. In my reading I have come across a similar message. I am currently reading the books of Carlos Castaneda. He relates the teachings of Don Juan, who argues that the only life worth living is that of a warrior; someone who performs every act as if it were their last on earth. The universe is telling me that I will not be here forever and so I’d better get on with my plans, and do them well!
Although I have decided on a few things to focus on, my main personal goal is to stay well, and to do this, I need to continue to take things slowly. So I am not worrying about not accomplishing too much this year; I have already achieved perhaps one of the most important life goals for myself, as part of my management of MS. I hope that you too will have decided on a few important things to focus on; and if you haven’t yet decided/started working on it – you still have six glorious months in which to do so.