Feeling Guilty .

Everyone feels guilty sometimes, but when you know you shouldn't feel guilty because it is not your fault, thats another story.
 Having MS i can feel guilty more often then not. I know that MS limits me with certain things and that i cannot function like i used to be when i was healthy. Yet i cannot help but feel guilty at times.
 I know this is ridiculous because its not my fault i have MS, but yet i feel like this at times.

 I am not an early bird in the morning and i never have been, but now having MS i am definitely not anymore and this is not a choice of mine. I wake up with stiff legs and pain throughout my body and even after a nights sleep i wake up with fatigue sometimes. The pain and sometimes the numbness is enough to keep me longer in bed. i take no medication except sometimes sleeping pills, but that is merely so i can sleep through my pain. I know this is my MS and some mornings are better then others but the guilt that i have makes things even worse sometimes .

 I suppose i feel guilty because of a few factors. My son has already left for work and i used to wake up for him in the days that i felt better then now. luckily he needed me more in those days and now he is much older, so he manages fine. Then there is my husband working from home in the morning and already sitting behind his computer working away. I normally make his breakfast, which i still do but at a delayed time. This is all fine and he understands but the problem lies with me, i feel guilty!

 It seems like the world is buzzing around and everyone doing their thing and heading to work or some appointment and i am in bed trying to force myself out of bed. I'ts easy for others to say "oh just get out of bed" when they have no idea what MS feels like. Most of us do try many things of changing our way or techniques so we can face our days easier. But when you have been woken up many times during the night due to pain because you over did things that day or just because for no reason you suffer from pain , its not so easy getting out in the morning.
 I suppose we can feel quilty because not many people understand our struggles and even explaining this is almost impossible because its not visible . And so the quilt begins.

 We may seem lazy to some or "got it easy" but trust me i am sure many of us would rather set that alarm and wake up feeling normal then compared to a stiff rag doll. I know i would rather wake up at 6 AM and feel healthy then the opposite. But the fact is we are not and there is no reason to feel guilty because it's not our choice. Every morning is the same challenge for me of getting out of bed due to my MS and i feel often that i am missing out in the world due to my condition.
 I have a strange motivation of getting out........ and i know its very weird but it seems to work for me. Of course its for my family but my other reason is putting on my favourite clothes for the day. I know it sounds stupid but i love fashion and the thought of putting on my favourite clothes for the day seems to work for me.

Whatever it takes for you getting out of bed, do not feel guilty! We need our rest!!!

Best,
Mascha

"Not the way it seems"

Having had MS for many years but was not diagnosed till 2012 ,you become adjusted to your life changes and symptoms and mostly your triggers. When i say triggers i mean things that trigger my MS symptoms. For me this took a few years to realise what those triggers are and getting all the information regarding MS. To me this has helped enormously .I can avoid certain triggers most of the time, and if i can't avoid them i know what caused them. This helps with my everyday life although sometimes i ignore them (yes i am stubborn) and end up suffering the consequences of doing so.

 Now this didn't come naturally ,like i said it took me years and i am still learning as i struggle along the way. You could also say i have mastered this skill quite well as some people think my MS is not doing too bad these days. obviously I've fooled them because its the opposite. I would say i have more symptoms as the years go on , but i know how to live with them or in other words hide them really well. I have also learned to not say anything and i find this skill really hard. It becomes such a lonely disease.  Not saying anything or seeing anything is tuff. People think you are fine and assume you are not sick because you look fine. Not talking about it is difficult and often when you do talk about it people do not want to hear. I understand you don't want to hear about it but when you ask "how are you?" are you really asking or just being polite??

 Then there are those that don't want to hear it because it hurts. Sure i can understand this as some see their loved ones maybe everyday and see their struggles on a daily basis. This is hard for them but also for us. We do our best to hide our struggles but some days are just too hard and we want to get things of our chest a little bit. We sometimes just want a listening ear that is all.

So i really just have adapted to my MS and when you say "you seem to being doing fine"well......let me tell you i am not. I am just better at hiding them from you.

Hey i can even fool my doctor and neurologist!! How good am i????
Am i alone on this???

Best,
Mascha :)