If you have come here today hoping to be lifted up with a silly anecdote or embarrassing story then sadly I am letting you down because I am feeling totally hacked off.
I am so tired and yet I have slept through the night four nights in a row, a minor miracle for this insomniac. I should be refreshed, with a spring in my step but it would seem that my "get up and go" got up and went. What is left behind is someone that resembles a hot mess in a bathrobe, sitting on the sofa trying to build up enough oomph to shower ... again. This is getting OLD!
I have some design work to do today, which is good as business sucks right now. I love running my own business and being able to work from home but the downside right now is that the economy has hit hard. The first thing people seem to cut back on is advertising, brochures and websites (I get that rent needs to be paid but you also have to advertise and keep trying to get business people!) and so it makes it so hard to survive right now. The end result is a seriously overdrawn bank account and no apparent light at the end of the tunnel.The problem is that I literally do not have the energy to be as pro-active as I need to be. It is making me nervous because the reality is that I need to figure out how I balance feeling like crap every day with getting new clients and keeping my business afloat. How do people with MS run marathons when I don't have the energy to run to the front door when the postman comes?
Thankfully I have my loyal clients who are amazing and are totally supportive and I appreciate them so much. It isn't working with existing clients that I am struggling with, it is trying to get "out there" and gain new accounts that I can't handle right now. I have no "fight" in me and it is a competitive market, I need to fight for new clients.
I'd like to digress here for a second to tell you something that happened with a client yesterday. This lovely client sent me an email asking if I got her web updates done from the day before. I replied that I did it right away when she emailed me (I'm good like that ha ha), had she refreshed her computer? I felt really bad when she replied that she had been expecting my usual "all done" email. Bloody cognitive issues I thought to myself, I was sure I had emailed her. I apologised for my brain fog.
Luckily she knows about my MS and she was totally understanding, as she always is. About an hour later I was looking through my sent emails looking for something else when I came across the email that sure enough, I had sent the day before. I forwarded it to her, saying that I thought I was going mad but relieved to know I hadn't imagined sending the email. She hadn't received it and apologised for making me feel like I was going crazy, she then asked if she "made tomorrows blog". So here you are Victoria, you made it and for the record I appreciate your business and your support.
I am drinking cup after cup of coffee to the point where I feel like if I was to cut myself open it would be coffee that came out of my veins instead of blood and yet I am not at feeling "caffeinated" enough to deal with my day. I think this is one of the hardest things to deal with, the mind-numbing, body-crushing fatigue.
When you try to explain MS fatigue to a non MSer you get the "oh yes, I get tired too" sort of response. This is literally debilitating. I know I have talked about it before and no doubt I will talk about it again because it is so hard to explain. This isn't just tired, I literally feel like I want to curl into a ball and not move. Blinking takes effort today. My body feels heavy, like it is being weighed down by an invisible force.
Anyhooo Bleeps, that's me for today, cheery cow aren't I? I am broke, fed up and have no energy to do anything about it. For the first time in years I have no holidays booked and no money to make plans for one (anyone that knows me will tell you how much my drunken, karaoke breaks mean to me). To add insult to injury, I am sitting here and my knees are throbbing and feel crazy hot from inside. Who the heck has throbbing, burning knee caps? Sod off MS, I am not in the mood for you today.
So enough about me, how are YOU?
I know the feeling all too well! My last doctor appointment revealed that my EBV level is extremely high right now, which I guess explains my recent surge in symptoms and exhaustion. As of right now, it's 5:30am and I have yet to get to sleep because my combination of drugs, spasms and restless limbs haven't allowed me to sleep yet. Hang in there, supposedly this too will pass (for a while).
ReplyDeleteHi Niki,
DeleteI am sorry to hear what you are going through. I hope you can get the rest that you need.
Thanks for reading and taking the time to leave your comment, it means a lot.
Love,
Karen
x
ooh karen i feel for you, but pick yourself up because you know you can,or just sleep, listen to what your body is telling you, are you getting dla, because you are intitled to it.hope you feel better , i had my bad day yesterday.
ReplyDeleteHi Shirley,
DeleteThanks hun, I did listen to my body as it gave me no choice and dumped me on my a$$ yesterday. Glad you seem to have had a better day yesterday, hope today is great too!
Love,
Karen
Hi Karen,
ReplyDeleteOh yes,I know too well what it means to be imbedded with MS Fatigue..
It is not pretty at all...
When others,meaning well inform that they get tired too,ohhhh,try and control that rising body temperature n accompanying blood pressure spike...
No way is being tired an equivalent to MS Fatigue... This type of fatigue pulls at every single raw broken apart scraggly nerve fiber on our internally broken frazzled brain and central nervous system as if we are in the depths of a terrible case of the flu,full blown no protection raw FLU!!!
Yes,the symptoms of the FLU,without any medical relief,without medicine to stop this assault so we can resume our everyday life as we are expected to do. Even when on disability we must wash up,and participate in life,after all this is not going away like that awful flu...
Okay,thank you for the opportunity to share what Fatigue can feel like to someone with MS...
Hi Yolanda,
DeleteYou describe it so well, yes it is just like flu isnt it? It is nice that people can relate but it sucks that we can relate too, if that makes sense.
Love,
Karen
x
That is exactly how I feel this a.m. Too tired to take the energy to typt but, hoping it will help. I believe, for me, some of the fatigue is due to no plans to see anyone, so nothing to look forward to. Don't feel depressed, just frickin exhausted. So tire of being tire.
DeleteYolanda is so right. Great depiction of MS fatigue.
ReplyDeleteI've written a lot about MS fatigue on my blog. Only because I have it. Otherwise it would be the last thing I would want to write about.
Here is one of my poems about it:
A bag of rocks slung
over my weary shoulder
while climbing uphill.
My breath is labored.
I stumble on the rough trail.
No relief in sight.
Ordinary walk
made extraordinary.
That's my daily life.
All my poems about MS fatigue are at this link: http://lapazconvos.blogspot.com/search/label/fatigue
I hope you can unsling that bag of rocks.
Judy
Thank you Judy,
DeleteI love that poem - so true!!
Thank you for sharing your blog link too. I will be reading.
Love,
Karen
I too am new to MS. I’m a 48 male with a 17 moth old daughter, better late than never. I used to be a pastry chef who could run a oven that is the size of a small house, and one smaller oven, with 4-6 workers making stuff to fill those ovens with goods that where made from just raw ingredients. Not only making sure nothing was over baked, but I would also make sure that those in the bakeshop were preparing everything the right way (I was a little anal), and I too would be making stuff to fill those ovens, and could easily do this for 14-16 hours 5-6 days a week. I can remember one month I had a Sunday off!
ReplyDeleteWhen the MS attacked I was lucky to run after my daughter and maybe cook a proper meal. I did not lift my daughter for almost three months; my wife would place her in my arms while I sat in a chair. Thankfully I did not eat and had help with my daughter when my wife was at work. The lack of energy is for me the biggest issue with the MS. I can live with a cane, my right hand not holding a knife very well, the sleeping issues, the inability to go at one end and too much at the other end, cold tingling feet in the heat of summer, I couldn’t remember to remember, even the slight difficulty in swallowing, heck I can live with all those issues. But the lack of energy is the killer for me.
However, as of late I have been much better with the energy, not like before but much better. I’m good in the early part of the day, and then as the day wears on I slowly burn out. Now this may sound bad, but in compression to when I was first attack by this insidious MS, I am much, much better. I believe that the reason for this is three things, 1) anti-inflammatory diet, which sucks because I know my way around a kitchen, 2) weekly acupuncture on both the front and my back with the help of magnetic field therapy, 3) a great deal of supplements. Have combine to help me live much closer to who I was before MS than who I became with the MS.
I was told my first neurologist that I would more than likely have two good months and two bad months. Since late spring of 2011 I have had 3 bad months, and the rest of the time I have been moving up to being maybe 85-90% of my former self. The 10-15% that is missing is due to lack of energy.
In my battle against MS I am trying to get some LDN which should/may further help with some or all of my MS issues. I wish you and all who have MS the best of luck in our battle.
Thank you so much for sharing your story. I am glad you are having more good days than bad and you seem to have a positive outlook, which I think is one the hardest things to maintain when being constantly knocked back (that is how it feels for me).
DeleteI hope your good times become more and more so that you can enjoy your lovely family to its fullest.
Good luck to you and again, thanks so much for sharing.
Love,
Karen
Hi Karen !
ReplyDeleteI found your blog on the internet. I began reading todays post and about You on Your profile. You seem to be an interesting person whom I can relate to. I, myself have had MS since 2008... :-(. I have two children whom I love dearly. The thing is that I whant to start my own business but I never get around to... Im scared that my MS should get worse do to all stress whith having your own company. Im into interior design. Before I hade Ms, I liked it when things where moving fast around my and my biggest asset where my creativity... But now I see my self lost ???? Im really glad that I found Your blog and im going to continue reading it to see how You do and manage and of course continue to be inspired
Your new Friend // Ulrika from sweden
Hello Ulrika (my new Swedish friend),
DeleteI am so glad you found the blog too, you are not alone in how you feel. I feel like I am losing the "old me" too and I dont know who the "new me" is most days. I can relate totally!!
Can you start your own business slowly and just do it at a pace that you will be able to balance stress and health? It isnt always easy for sure but it may give you something positive to focus on ...
Keep in touch.
Love,
Karen
You have a gift for describing MS symptoms. Every time I read your blog, I am better able to explain my symptoms to my family and friends. The fatigue is so weird. There is no rhyme or reason to it. It comes on suddenly and I litterally can't get off the floor.
ReplyDeleteOh thank you so much for your kind words, I am happy that you have found the blog helpful. I find it personally helpful to share with other MSers so thank YOU for reading and commenting too.
DeleteLove,
Karen
diagnosed with MS 8/09. The fatigue can mess up any day. Have you read the spoon theory?
ReplyDeletehttp://multiplesclerosis-relief.com/ms-center-and-the-spoon-theory/
Sorry that you are also a member of the club that nobody wants to belong to!
DeleteI havent read about that but I am off to do so now so thank you so much for sharing.
Love,
Karen