Hitting that gym 🏋️‍♂️

 Dear readers ,

Some of you may really hate the title and I get it ! Years ago I would have hated it myself . 

It’s a delicate subject because everyone is different with MS or at a different stage with their MS . Years ago I would have hated that title as I was absolutely unable to even think about exercising. I was even using a cane for a while and struggling to use the stairs . In that time there was a lot of stress which didn’t help the situation. 

Moving forward a few years and I got myself to the gym and got a personal trainer to get familiar with the machines but also to see what I was capable of . There’s been a few hurdles in between and I broke my hip which made me start from scratch . I needed an exercise psychology who specialises in illnesses and limitations like my hip . At the start I saw her once a week which helped me rebuild my strength for MS but also my hip. 

Unfortunately I couldn’t afford the training sessions anymore so went on my own to the gym . Before my hip I was training twice a week on my own but now with the hip issue on top I was a bit scared to use certain machines. My EP trainer showed me a few exercises to use in the gym , that I use to this day . 

I would highly recommend an EP trainer as they really understand your limits and  your fatigue and issues that come with having an illness .

However I had to say goodbye to mine and continued on my own with the exercises that were shown to me . I now go to the gym twice a week and to be honest if I miss a day I absolutely feel my fatigue setting in and getting stiff . The hip is another issue but for now I need to keep it moving . 

It’s a hard struggle because there are days I can’t move or I haven’t slept well but I try to force myself to the gym . The result is usually positive after .

I do strength training to keep muscle strength and not loose my ability to stiffen up and to fight fatigue from MS . I now realise I have no choice but to go to the gym . Some of you might get offended by this just like I was years ago, but it all depends on your journey with your own MS . I never imagined years back I could go to the gym and  now that I can I really do enjoy it . 

I know that pushing myself to go more than twice a week would be hard . I need the time to recover in between and just like my EP trainer told me , I need “ recovery time “ .

My aim is to see my EP trainer again for an updated gym session again. 

I hope you find your gym or favourite sport and maybe for some of you it’s not possible  and I totally get that . 

Let me know your story :)

Best Mascha :)

You can’t see it 🤷‍♀️

 Dear readers,

I have covered the invisible side to MS many times and to be honest it’s an ongoing problem.

Here’s why it’s a problem - generally we are not believed because we look so good and there’s nothing to see on the outside so we must be fine . Well no , just because we look fine doesn’t mean we are fine . 

It’s almost like we get investigated on a daily basis and we need to prove our innocence. Now I have given up explaining or I give very short answers because I can’t be bothered to explain anymore . 

The problem is getting the same questions over and over again and having to repeat myself . So my answers have become short statements “ it doesn’t work for me “.

I would get the “ let’s meet for breakfast “ or “ why are you not cooking “or “ spur of the moment invitations “. They really don’t work for me . 

Everyone is different with MS and my struggles are early breakfast out , mainly because my sleep gets disrupted and I take a little while warming up like an engine I suppose . It’s not getting out of bed early that’s the issue but just getting my body to fully function.

And for cooking that’s a whole different thing again , the MS fatigue and the numbness in my legs and arms and heat all add to the mix of not always able to cook . It’s not that I don’t want to cook or I am lazy , it’s just that I am not able to some days . 

Then we have the last minute invites which sometimes work but other times it’s a real struggle and especially if they are in the morning or evening. Depending on what I did the day before or on the actual day , I might not have the energy to go out unexpectedly. Don’t get me wrong I would love to , but my body has limits . 

These are only a small part of the problems that people with MS struggle with and these experiences are totally mine .

Often we get seen as being lazy or not trying enough but having had MS for roughly 30 years I know what works best for me now . 

Yes we do loose friends because of this and it’s really sad that there is not enough understanding. Although there are more movies about MS and one of them is called “ Take my hand “which I recommend. ( director John Raftopoulos )

And most people with MS would know the term “ but you look good “ it’s a compliment but at the same time very frustrating.

What people don’t realise it takes a lot to maintain symptoms and live as healthy as possible . These are not a luxury but a must . I have to keep my body moving and doing strength training at the gym regardless how bad  I feel . I need to eat healthy to keep the right weight and reduce my symptoms. I know the health part is important to most people but this is a must for me to keep my MS stable . 

It’s not a luxury and it’s damn hard hitting the gym with MS fatigue or numb legs and arms for example , but it’s necessary for me .

I hope my readers can relate to this one and please watch that movie and enjoy your popcorn 🍿 

Best, Mascha 

Knifes and Forks

 Yes it’s a bit of a strange heading I agree 🤪 

Over the years I have been struggling with cutlery and most of the time I use my hands regardless if I am in a nice restaurant. 

It’s not really my choice to be honest to eat with  my hands but I struggle using the knife and fork while trying to cut a steak or even chicken . Not because the food is over cooked but merely because my hand and arm is weak and it causes pain but more so awkwardness. For me it’s the right side and even though I always try to be proper , I really struggle .

Sometimes I will just chop it up in pieces and just hold the fork and eat it with just my fork . I guess it’s holding the cutlery that makes it difficult for me just like holding a pen , which by the way I struggle writing as well . I find it very hard to write and when I do it’s very messy . It’s the same as the knife and fork that writing is challenging by holding the pen . Filling out forms is hard and I manage much better with typing away on my iPhone . 

Yes I feel embarrassed at times when I am somewhere and having a meal and I struggle using the cutlery. Over time this has become worse and i realise I need to accept this and just cut it awkwardly and  hope for the best or as I usually do , I use my hands . 

I now try and get my friends to fill out the forms if writing is required. They always look at me with confusion because again I don’t look sick . Again one of the invisible symptoms of MS . 

Does anyone experience this ? And if so what do you do ?

Please don’t judge when someone struggles with cutlery or drops them to the floor a few times …… she may have MS or an autoimmune condition.  

Mas :)

Feeling understood

 Hello readers,

It has been a while since I wrote last.

A lot of my blogs are about invisable ,not understanding or the dynamics of having MS.

Having MS or any other illness there are limits to our everyday life .This may not be visible as we can have good days and bad days. This doesn't mean we have no MS on good days, it just means we can tolerate and manage it better . And yes at times we are probably  not managing but we are pushing ourselves which often results in our suffering the next day .

You can not compare someone healthy to someone who has MS or any other illness ,it's just not the same and it's not fair . When I say I am tired it is not the same tired as someone healthy and there are many layers to this tiredness, physically and mentally .

Our thinking can be impacted as well and it can give a delayed response or not at all. This is due to many reasons being fatigued or our neuron's delivering the message slow for many reasons and another reason is heat which causes delay .

There is also social cues that do not always work or again are delayed .Stress is another big trigger which can cause many symptoms .

It's upsetting when the general population does not understand and we find ourselves explaining things or worse defending ourselves . By having to defend ourselves we don't feel believed and this is hard to take in . It's already hard living with MS let alone having to explain ourselves .

No they are not excuses but they are real problems to everyday life and they are real.

The problem for me is that if people have more understanding or empathy it takes away the stress of the struggles I already face ..Just knowing that I am not perfect because of my illness and to give me a bit of slack and compassion would be great .

There is more awareness out there and TV shows show more about MS these days, but yet there is still no real understanding . Don't bring someone down that is sick and fighting her battles when you are the healthy person. Instead have some compassion and thank god there are people like this .

You've got this MS warriors!

Best

Mascha

To my readers ;)

 Hello readers,

You may have noticed I have changed my name slightly for my blog. Don’t worry it’s still me 🤗 just for security purposes I had to do some adjustments. 

Will also write a new blog soon :)

Mas x

Best Support Ever.

 I have been wanting to write about this many times as it is so important in my life.

Having a good support network is so important and our support can be anywhere, from our doctor to our neighbors. One of my biggest supporters are my kids.

I have two sons aged 26 and 25 and they are my biggest support. One is the emotional caring son that lived at home the longest. He would sense if something wasn't right or I had overdone things. He would simply say ' mum you have MS and you probably need to rest". He would just know and without asking he would help out. The empathy he has is amazing. 

My oldest son moved out of home earlier but still experienced seeing mum dealing with MS. He is probably more the practical, in the books kind and that showed in his studies. He has a degree in psychology and is now studying for his PhD. He is one of the   research teams studying for MS and sleep disturbances. His knowledge and advise he gives are amazing.

I am proud of both my boys in every way and forever thankful for their support. Both of them should be proud of who they have become.

Growing up and living with a parent that has MS is not easy and I believe a lot of patience and understanding is required. I have no idea how hard this would be for them, as I am the one with MS. I can only imagine how it would feel. For this I am grateful.

There are no amount of words that could show my appreciation. Hopefully I can show them by being the best mum I can be.

Besides my sons I have   lovely Neighbour's who have become my friends. She is a beautiful person and her sister moved here not long ago, she also has MS.  They are such a great support as friends but also, they seem to be looking out for me. 

Support can come in many ways, but I do feel this is very important to those that have MS . It's so important to feel understood and receive empathy. It just makes our daily life much easier to cope with.

To all those people that support us during our MS, we are thankful that you are there making our journey in  some way easier.

Love always,

Mas x

We are not the same

 It has been a long time again since my blog, so here I am.

To this day MS is still not very familiar to people. They have heard of the name, but most people do not have any idea. I do not blame them really as there is not enough information about this.

However, if people really want to know more about it they can look on the internet. At the same time the information given does not apply to everyone with MS. Each one of us is different and this can be physically and mentally. 

For myself i have many symptoms on a daily basis and these are invisible. This is hard for friends to understand as they cannot see it. This doesn't mean i don't struggle on a daily basis.

Just because I did a long walk does not mean I don't suffer the effects of my legs being weighed down as soon as i am home. My stubbornness also does not help.

Many would ask why don't you work? It's simple really, I would not be able to handle the challenges of being reliable and showing up at work. I struggle in the mornings and not because i enjoy sleeping in, but because my body takes a while to function. This is physically and mentally. 

The mentally part is a bigger problem for me then people can imagine. Again, its invisible. I struggle with multi-tasking and memory and when i get fatigue then these issues get worse. I often don't sleep well which makes the next day even harder. There are so many issues for me that considering a job is just not possible.

I know there are others with MS that have jobs and they seem to manage. I applaud those that are working, and they should be proud of themselves. But again, each person with MS is different.

I will always remember what my neurologist told me' Keep doing what you are doing. Those words till today inspire me.'

Unfortunately, in my experience a lot of people judge. I believe because it is an invisible illness they generally do not understand. This can be problematic for those of us that cannot work. Speaking about my own experiences, this kind of attitude hurts. There is nothing more than wanting to be normal and function like a normal person.  But in reality, i have multiple sclerosis and my body doesn't allow me to function as normal.

Please don't judge. We are trying our best to live a normal life.

Best always

Mas x

 

   

New post coming .....soon

Where is my head 😫

 Where is my head is literally how I feel at times. This is one symptom of MS, cognitive issues.

Let me share my story. Everyone has a different experience including those with MS.

I know for myself being under a lot of stress has a big impact on my cognitive issues. They vary depending on the amount of stress, lack of sleep and fatigue or heat. I would say stress is the biggest problem. If the duration of stress takes too long my brain basically hasn't got time to breathe. 

A lot can impact this problem and that's noise, a place that's very busy with crowds or talking all at once. This can feel very overwhelming.  My brain tends to get cloudy or fuzzy. It can also give me pain.  It's a world of cloud and mist that I'm struggling to get through.

The world is moving along and I'm trying to catch up. Be it catching up socially or just trying to keep up with this world. 

Many things like electronic issues, trying to do tasks.  Tasks can range from doing grocery,s or just simple things in the home.

I have one story which got me totally upset for two days. You could say I felt so helpless and frustrated and the worst part not understood. Brain fog is invisible. 

So I had to call my bank. A simple phone call just to confirm my credit card. I got security questions which I didn't know any answers to. I had cognitive issues and at that moment my memory just went blank. 

I failed all questions and as you can imagine they didn't think I was the person I said I was. She gave me a few more questions and I was totally blank. Couldn't remember any of them. So she locked me out of my account. 

I totally felt useless and so upset. Now I got instructions how to proceed further but the problem is that , that's one of those tasks I find extremely difficult.  It's the understanding of the task and doing. 

I am sure I am not the only one with MS struggling with this.  I seriously believe there needs to be support on people with MS  that are unable to do these things. 

Cognitive issues are invisible.  They are a real problem to those with MS. Every day living is difficult.  Multi tasking and decision making are a big part of this problem. 

Our world is sometimes clouded and although we may seem fine, we need a little help in this world.  We need understanding.  We are not okay.  We have MS and need support.

Best

Mas x

Boring life of MS

 It has been a while since my last blog. In the mean time I have moved country , been in hotel quarantine and decorated my new house and oh yes Christmas has just passed. 

Life has been busy but also chilled. Life in Australia is for sure easy going. What I have noticed is friends or people that I meet are concerned for my everyday life? They seem to be worried that I am totally bored in life. It is a fact that I cannot work due to the many symptoms I encounter on a daily basis and I cannot play tennis like I used to do. But that does not mean I am bored. I am quite happy just decorating my house and being at home and days of shopping spree's. Yes I love shopping and you may wonder how does she with her MS? That is a whole new blog!

My point is that people seem to be worried that I am utterly bored because I don't work or have a hobby. Because MS gives so many symptoms it is very hard to have things planned or booked on a weekly basis. Every day brings new symptoms or problems and the stress of worrying whether I can attend only adds to the problems of MS. No I am not bored and quite happy doing the things I can do with my limitations. I guess it's very hard for someone to understand this if they have no limitations on their life. When faced with daily pain it also changes a person. I can not imagine joining a painting class while having numbness in my arm and leg with searing pain. I like painting, although I cannot paint and the last time I painted was years ago . No I cannot imagine sitting there trying to use my arm which is numb and pin and needles searing through my arm. This doesn't mean I won't try anything because I am known to be stubborn. 

Because MS is invisible it is very hard for people to understand. They cannot see the pain, and challenges that come with having MS. We are usually happy to seem normal on the outside. 

I can speak for myself and I can tell you I am not bored. This disease causes too many challenges to be bored. A healthy person should not compare their everyday life to someone with MS or any other disease. Reason for that is because our life is so compromised due to MS you simply cannot compare. Your daily life may work for you but someone that has MS or any other disease can simply not do the same as what you can do. 

My neurologist tells me ' whatever you do keep doing it'. His words are forever in my head when doubt comes in. So when a person tells me ' you should not eat chocolate' or you should read books' that doesn't sit well with me. Firstly I do everything I can to live a healthy lifestyle and I am not giving up chocolate!

I am sure people mean well but please don't worry about me, I've got this :)

Best

Mas x

The influence of stress.

 Daily life of MS is for most a struggle. The symptoms we struggle with on a daily basis and the unknown of the disease itself. There are so many stressors that come with MS that it can be exhausting.

 There are loads of stress factors and although they vary for each individual with MS differently, they still effect us. They are as simple as " what does today bring" ? Am i able to clean the house or drive my car today? Vision is one symptom of MS and for myself,some days i am just not able to drive,well maybe i am but I don't trust myself that particular day may it be my eyesight or my trembling leg.

 The mayor stressors are of course " am i in a flair" or exacerbation as it's also called or an attack. When the body attacks itself basically. I won't get into this as that's a whole new blog.

"THen there's Covid..........

Covid is a stress for everybody and although in the beginning of covid i was quite chilled about it. I figured not a lot of changes regarding lockdown for me,as I'm used to staying at home a lot.

How things can change. Firstly we are already a year into Covid,yes already one year into this damn virus. The stress we encounter on a daily basis is in my view huge. And this is for everyone. The Tv that brings fears into our lifes on a daily basis and the continuation of lockdowns and curfews are never ending. The rules and regulations that all has us confused and basically the world has come to a standstill.

 This article is not so much about Covid but more about Covid and MS. Now being a year into Covid I really believe it causes a lot of stress on top of our MS. Our life with MS is already stressful and unpredictable and we never know what each day brings us. Now throw in Covid, and the uncertainty of life or our regular routine gets put in the washer and brings a whole lot of unknowns on top of our MS.

I definitely had way more stress then usual due to Covid . Our families that we rely on are now all of a sudden in the unknown and feeling life is uncertain and maybe even some are depressed. As for myself i rely on my son and husband as my base, my safe base. Things are safe and my daily life with MS is uncertain. I don't see this as a bad thing but probably a very normal response when you have an ilness. You try to hold on to your safe anchor and your safe comforts because life with MS can certainly take that comfort away. When this changes due to uncertainty of covid on most people's life,it can definitely be a big stress factor. I've definitely encountered this myself and the uncertainty of life gives me a lot of stress. I think for those that have MS or any other ilness will find these times stressful. Of course our younger generation are suffering as well but we cannot forget that stress for MS can trigger all sorts of symptoms and set off a full exacerbation (flare). If it's one thing that's not good for us it's stress.

Not so bad...............

I disagree with this feeling i had of a year ago. I actually think that it's been very stressful and it does have a big impact on my MS. Not just emotionally and physically but also not being able to visit my neurologist who I visit yearly for my MRI. I have now missed out my second year of seeing my neurologist due to Covid and i am sure I'm not the only one. These appointments bring stress to me as i hate having a MRI,but they also bring comfort. Comfort of talking to my neurologist face to face and him telling me " keep doing what you are doing " you are doing well.  The comfort of him listening to me about my year of MS. These comforts have left . 

 Basically my whole network of my MS has vanished. Sure this doesn't happen to everyone but i live in a country where there is no MS specialist and no support group. I am the one that needs to fly to Amsterdam from France to be able to see some sort of support and have my yearly control. This year again i will miss out on my control. So I disagree with life doesn't change much for those that have MS,because in my view it definitely does change.

Support is so important now..........

More then ever we need the support at home more then ever. We need the reassurance of life and knowing our MS will be fine in these times. We need more love then ever. We need to know we can depend on our loved ones in these uncertain times. We are already vulnerable thanks to our MS and although not many people can understand this as it's invisible, I believe we are more susceptible to the stressors of the way life is now.

Mas x