I Have Lost My Way but I want to Find It Again

Photobucket

When I first started this blog I wanted to spread positivity and help people connect. Some would say I have done that. I have brought almost 270 MS’er together in my Facebook support group alone and have received numerous emails from people who found my Youtube videos helpful despite the fact that I think they could be done so much better. I had a message and that message helped many but now I am finding that I am lost. I no longer have a clue as to what I believe in. I am loosing faith in people, I have become a morbidly pessimistic person, and I don’t like it. Worst of all, I don’t know what to do.


I feel as though my life is consuming me and MS is helping it out. I have been struggling in a pit of quicksand for the last few years and I feel as though I have lost all the strength I had to pull myself out. The sand is at my shoulders, my neck, my chin, and now I’m struggling to keep my lips above the surface. How can I help others when I can no longer help myself? I empathize with that picture of the crying clown; his job is to make people happy despite the fact that he is filled with sorrow. Sorrow that sometimes makeup, the strongest persona, can not hide.

“It will get better, it will get better”. I hear it all the time but what no one can tell me is how. Certainly not by sitting around and waiting but I can’t get a job, I can’t get disability, I can’t get any kind of help out of this sand pit. Without some kind of yank or push, how am I supposed to free an arm to pull myself all the way out? I am stuck and out of ideas and there is no one out there to walk me though this, tell me how I should approach my situation. I am typically a good problem solver but this one has me stumped and the daily stress that I endure only further clouds my thoughts and ability to figure this out. I feel suffocated by it all, I’m so frustrated!

I think this is the source of my pessimism which I try so hard to hide. Nothing seems to work out for me while I watch everyone around me get the world handed to them. I think I blame myself for the position I am in. Maybe had I not quit my job at CVS I would still have a truck, a job, income, friends, everything.  I could go on disability when I am ill but when I am well I could go back to work rather then sit around bored and useless all day. But it’s pointless to fantasize of such things, the past is the past, but deep down inside, I can’t help but wonder how things would be different.

I have dreams, I have plans, but I am not sure how to move towards them. I have lost all my motivation… Having little to no options does that sometimes. You feel like every which way you go ends in a dead end. It’s frustrating and eventually you just want to drop to your knees, cry, and give up because nobody understands 100% of what you are feeling. They can relate but no one can no just what I went through because they are not me with my various tolerance levels, they did not go through the exact career choices as me, did not have the same relationship and friendship issues as me, maybe similar, but not exactly the same. Just as MS effects everyone differently so does life. As hopeless as I can get however, I still know that logically speaking is a waste of time. Emotions and logical speaking never agree but they help keep each other in check. I know the logical answers to all that I am talking about (except how to actually get out of this mess) but what I am sharing with you now is the emotional side to my situation because the emotional side is growing so rich with power that it is overthrowing my reasoning capabilities making me depressed and pessimistic.

I have relapse 3 times this month. Today I have resumed my daily pills and have also added Gabapentin into the mix because the pain seems to be a new symptom that will be staying around. I am not sure Gabapentin will help much but I figured I would give it a try. I need to get serious about my eating and exercising, I say eating instead of dieting because I am noticing that I am not eating as much anymore do to depression and stress. I need to take my life back. I am not sure how but I need to start doing something to at least be healthy and ready to move on to the next step. I am working on a new photography blog. I think I have mentioned it in the past but I never really did anyything with it. I started working on it the other day again so that I could have something to work on that has nothing to do with health and work. I needed a hobbyy and right now this is what I can do.

Visit my new photo blog by following the link below:

http://mattallengphotoblog.blogspot.com/

Be sure to click the “join this site button” to make me happy even if you are not going to follow it, It won’t send you email alerts or anything no worries, just nice to see some kind of following.

I’ll write about how I am doing tomorrow.

Thanks,

41 Responses to I Have Lost My Way but I want to Find It Again

  1. Anonymous says:

    I can relate, but no I cant completely understand. I am going through the whole quit my job to focus on my health, now cant find a job so im sick because im so stressed out thing. I need money,like mega millions/power ball kind of $, but I am often faced with the am I going to eat or play the lottery type of question. My support system is fairly lacking but I am thankful to have one at all. Scared too, because if I am ever disabled to the point of not being able to care for myself at all – Im fucked. I go go go and go and it seems like all I is hit a wall. Trying to figure out how to get around it is exhausting. My legs and feet have this sandpaper rubbing, nail poking,crab cracking pressure thing going on, but because I dont look like anything is wrong and try not to act like anything is wrong my issues are quietly swept under the rug. So…if you figure something out I cant wait to read about how you got there.

  2. Anonymous says:

    Hi Matt !

    I found your blog while searching info about MS … I have to tell you that it is a great blog !!
    I have been reading it for little while…
    I haven't been diagnosed with MS (I'm having an MRI next month) but I had a very close cousin who had MS and know a little bit about it.
    I can see that you are having a hard time and that it isn't going your way …
    I can relate to your whole situation (but for other reasons on my side) but can't put myself in your shoes because as you said it is different for each one of us.
    I am 29, I don't have a job (and seems like I will never get one) and live with my mom as I can't get a place of my own (vicious circle!!)
    Anyways, I'm going to keep the "bla bla" of my so called life and tell you that I am sure you will get through this, you seem to be a great guy with a lot of qualities and one day the sky will be blue again (I wanted to say "what goes around comes around" but not too sure about my translation from French) … yes I'm french ! πŸ˜€
    Anyways, I hope you'll feel better soon and keep on the good work !!

    PS : your photographies are beautiful !!!

    xx all the way from France!! ;-D

  3. Matt Allen G says:

    Money money, money. How do we get money with MS? Had enough without NS! And without money you fall into at least ONE vicious circle. As I have mentioned before, I hate how doctors think if you look fine you are fine. Not only do I ot feel the way I look, it's a day to day thing. I might be ok at the doctors and then go home and fall apart. They cant see that and they dont believe that so no assistance for me! I wish I had a camera crew to follow me around or something!

    "Whats goes around comes around" not sure if I believe in that right now. Unless the karma pipe is clogged or something because i have not seemed to get any good luck. If it is clogged and waiting to burst my way maybe I should start playing that powerball huh? Haha….

  4. Jax says:

    It will get better Matt but I completely understand why right now it seems unlikely. Is there no way of volunteering somewhere like a local hospital where they could maybe help u out with a ride to and from? I'm sure someone would love to have you on board. I know it wouldn't solve everything as money makes the world go round but at least in the short term it would help u get out and feel like u had a purpose. Have u tried being brutally honest with the Drs? Surely that many relapses in a short time would deem u unfit to work. I don't know about over there but here so many crook the disability system, which makes it harder for deserving people to get it. It's all messed up. I'm sorry I don't have any practical solutions, I wish you had someone who could. Just wanted you to know that even know we've never, or will ever meet, I feel sad you're having such a bad time. Honestly though.. Things will look brighter in time and you'll come out this stronger. Your time will come. X

  5. Matt Allen G says:

    I wanted to volunteer at the hospital but when I was looking for their website again to download the application it was gone! Come to find out, KAISER bought them! SO idk how that works now but not to much point in rushing that right now since I can barely use my hands and walk again… Plus I tried tuning in my dial a ride application for the ride to and from the hospital but I couldn't because Kaiser dropped my insurance again last time I went over there. Should be back on now but it takes a decent amount of logistical effort to get over there in Riverside.

    I know of so many people who are using the system whether its for unemployment or financial aid for school. Then I really need it and can't get it. Its very upsetting.

  6. J. says:

    Yeah it really isn't fair at all and must be really upsetting. The main thing is that however impossible it seems, don't give up hope. All these things will get better, even though at the moment it probably seems they won't. As you know too well, things can change in an instant, for the better too, so hopefully soon the tide will turn in your favour. One of these job applications your sending away will come up for you.

    You probably don't want to hear this kind of thing just now, cos when you're in the dark place, it all seems like it won't work out, and the person chatting (me) is chatting sh** I've been in the hole myself and people being positive is annoying.

    Do you have friends that come over? Even just to take you for a drive to get you out the house when you feel up to it. Do your friends and family know how bad you feel at the moment? A problem shared is a problem halved, even if they can't solve the problem for you, talking helps.

    It seems like this insurance company are the root of all evil. I can't see how anyone would consider you fit to work, other than on your good days, but it's hard to predict when they are, so it would have to be a very understanding employer. It'd be best if you could get the sickness money you need, then were able to sort voluntary work that you could do to help out, when you were able. Here there's other places to volunteer, like schools for children with special needs, which is very rewarding, or charity work. It would be ideal if there was an MS charity near, you're so specialised in the subject, you could be so much help to them.

    Do you have a lot of family support? I know you still live at home. For me, if you were my son, brother or friend then I'd certainly notice how things were and be going out my way to make sure you were as stress free as possible and do the little things to try and make you happier. For me, my family have got sick of me being sick..nobody asks now, nobody bats an eyelid when I'm in hospital with sepsis or the like, or having another operation, cos it's only me. It does hurt. Maybe for some, it'd take them to have real health problems, to actually take the time to walk in our shoes. Then see that in actual fact we need a lot more support. Maybe your family is great and understanding (I hope), I just know a lot of families tend to have blinkers on when it comes to long term illness. Mines got bored a long time and I've lost my (supposed) best friend this year. Infact 2. To me it's their loss. If they can't handle me at my worst, they don't deserve me at my best. I know that story isn't uncommon as lots of people experience it.

    It's good you speak openly about your feelings, I'm sure there's many in the same position. Okay everyone's situation is different, but along the same lines. Your Dr needs a rocket up their ass, is there no way when your at your worst you can see someone? Present yourself to hospital and say 'could you work like this??!!??' HELP ME!!

    I feel your frustration! :o(

  7. Matt, I joined your photo blog by going there directly, but the join link in your post did not work after multiple tries. Anyway, what can I tell you about this journey except to keep doing what you're doing — staying interested in your photography, reaching out to your community, and somehow keeping hope alive even if a good outcome seems improbable. In a "quantum physics" way, focusing on hope may open up a higher probability outcome for hope to be a force in your life.

  8. Matt Allen G says:

    I don't have many friends to be quite honest… Fit to work? So long as you LOOK fit to work it seems they want you working. I would LOVE to work but I know I can't. and certainly not for half a shift even! Not right now at least.

    And haha, what is that theory/belief that if you want something bad enough you can effect the universe in such a way that eventually it will come your way?

  9. Anonymous says:

    Suggestion:

    Try to get qualified for welfare/food stamps. Not sure where you go for this — dept. of health and human services or a state welfare office. I suggest this because it would give you some money and some independence, but it would give you a way to get some good nutritious food in you, like that juice you talked about. I am convinced that this eating correctly thing is the way to go!

  10. Matt Allen G says:

    I don't qualify for most of that and Im pretty sure they will deny me for SSI but still have not heard back yet. :^/

  11. Anonyms says:

    Just letting you know there are people reading this, and we all feel helpless. I wish I could summon a few thousand dollars right now just to help you out of the hole. I could use that too, as I am in one myself.

    MS has been a roller coaster of emotions, there are times you feel like "ok, I can deal with this, maintain and manage it" and it will turn around and basically laugh in your face and leave you fully/partly crippled. (or at the least make life VERY uncomfortable)

    I have recently questioned the purpose of continuing on. What does it matter right? Family will morn, but will they mourn a lifetime like we do? Alot of people with MS have found their way to ground themselves, and to manage it. Or they simply are not having issues for the time being, and they tend to be overly positive, and trying to tell you (us) that its going to get better.
    Well it hasn't gotten better, it has gotten worse.
    When does it stop? For alot of us, especially us in our 20's the disease is very active.
    Do I live life into my 30's, 40's, 50's hating myself and the life I have, all the while people tell me "its going to get better"?

    I know this is not very helpful, but its the reality of it. This comment is to let you and others know that deep down, alot of us do think like this, but are afraid to let it out. Maybe it's for your visitors, who think its going to get better. Reality check, this is a f'ed up way of living life, and alot of their positivity is just false hope. Believe me, I do envy those that are positive in light of this bs disease. But I just cannot be like that. I am not going to lie to myself or you.
    We have a long hard road ahead of us.

    (sorry for the negativity, I just try to tell it like it is, or how I see it, you have read my writing before. (anonymsbs.blogspot.com) Delete this if you want, no hard feelings)

  12. Matt Allen G says:

    I am not going to delete the truth, it's just a perspective. We don't all share the same perspective and yes a lot of people with MS try to be as positive as possible and sometimes it helps them. But being so positive 100% of the time is not realistic. Yes, for some or most of us this is going to be a long, difficult, road. I can be positive and I can be negative AND I can be realistic. Admitting that life is not going to be the easiest for us? That is realistic. I just wish I could be more optimistic about it.

  13. Anonyms says:

    ugh, I posted a rant.
    From my perspective, I don't think there is enough talk about depression and MS. There is info out there, but its spread out. My doctor never mentioned it until I did.
    I have a feeling that more people with MS deal with depression than we know.

    Not everyone is surrounded with friends or family to help deal with it. Some have the support and still have problems with depression.

    Just don't think enough is written about it.
    People new to MS always find this site while searching for answers, just as I did. Thanks for that Matt.

  14. Matt Allen G says:

    I agree, not enough info about depression and MS, always the same answers… Thats why its best to be honest.

  15. Willowtree says:

    I had my ssi hearing two weeks ago. The first time I tried was 2004 – they have kept on denying me. I finally got a lawyer this time – you know those…we dont get paid unless you win people? Yeah – so here's my thing now, after the hearing the lawyer (who i had not set eyes on or even really spoke to until that day) says – ok, I think you did great, I think the judge will approve you, but here's the thing – and I dont know how my office didnt catch this earlier, but youll probably get denied in the 2nd half of the process because you live with your father.
    WTH?
    Where else am I supposed to live? He then reccomended that I move out and rent a room (even if I would consider it – with what am I supposed to rent a room? The last time I worked it was 2003.)
    I can't even –
    Anyway, there really isnt much research out there about MS and depression. I have seen reported that as many at 50% of people with MS will experience depression at some point. I believe it, Ive seen it, I experience it more often than Id like, and I also see that for us when the natural depression hits (I don't know about med caused depression) it seems to be a fork in the road – you decide on which path the next step will be – fml, i hate life and everyone around me and I am determined to make you as miserable as I am or ok this really sucks…what the hell can I do to get on up out of this thing.
    Neither way is the easy way out.
    I think we left easy a long time ago. The day before that first lesion started, we were on the way out of easy and didnt even know it.
    *hugs* to you Matt. I hope your path makes itself more visible very, very soon.

  16. Matt Allen G says:

    Yeah that's the same route I went with SSI… Got one of those "dont get paid till you win lawyers" but it all seems like a huge waste of time. Ill find a way to get healthy before I see any money from the USA.

    And yeah I would actually be surprised if the numbers were that LOW, I mean, I am sure a lot of people with MS get the chemical imbalance but you would think like at LEAST 80% of people with MS would experiences situation depression because this really does suck!

  17. this isn't going to help at all…. but here goes anyway…

    i am a believer of many things.. one of which is karma… i believe that the things in our life serve a purpose…yes, even MS or any other disease process…

    there are life lessons to be learned from everything… everything… and whether or not it is your lesson to learn may never be known… it could be that your life is a lesson for others to learn… maybe your disease and your struggles are creating lessons on those around you whose karma bank needs some adjusting… i know that sounds messed up… but as humans i believe we are all here to serve one another, the earth, the universe, and whatever high power we believe in…

    i have been a martial artist in the past, i am a meditator… and i'm very grateful for it… what i have learned about life is that it's much easier to embrace all things – even the not so pleasant things… make them a part of your life… as if we have a choice right? so if there's no choice in the matter, why not embrace and find a way to go with it instead of spending time fighting it?

    fighting takes up so much energy, time, and more times than causes anger, upset, irritation, and depression because the fight does nothing to change things…

    going with it… what that means is that you flow with the punch… find ways to make the punch work with you instead of against you… i know that sounds like a load of bull-hockey, but it works in many situations… even with some aspects of MS…

    as for positive attitudes and outlooks… i don't know that we all have those… certainly on some days i feel much more positive than others… but another thing i have learned is that i must choose to be happy… i wake up every morning and make the choice to feel happy… things could be so much worse than they are… truly…

    have you tried any yoga Matt? there are many videos available on youtube that teach you… and the MS Society has a library that you can order books from for free… there is a great one about yoga and MS… it helps to teach some of the concepts i've been writing of here…

    i know that none of this helps your current dilemma…but it might help with the depression, which in turn might help clear the mind, and from that point maybe a new perspective will bring new options… who knows….

    done rambling now…

  18. Matt Allen G says:

    I have found myself contemplating many different beleifs on life, purpose, etc, over the years but at this point I can honestly say I don't know what I beleive right now which makes choosing my action more difficult. I have to find myself again…

    And no, yoga never seemed to click with me haha…

    Ill eventually find peace but right now I think I have to let time do it's thing and maybe the new year will bring new hope with my new insurance and doctors etc.

  19. Amanda Feldmann says:

    I will never forget this quote. "I have MS, but MS DOES NOT HAVE ME!!!!!!!!!!" When I first heard Montell Williams say that on Oprah, I thought it was kind of corny….I was having a good day, was just diagnosed and quite frankly IN DENIAL!! I then had a horrible MS symptoms day (HMS I like to call it, and oddly I heard the TV on in the other room and heard the quote again. It was a replay of that Oprah. Ever since then, I LIVE day by day by that moto. I live my life each day, and don't let MS stop me, I just modify things a little bit. There are days SOO much worse than others that I see the moto I have written, tear it up, kick the couch (if I can) and SCREAM. Then after that, I regain my composure, rewrite it, and move on. No one is perfect. We all have our demons we are dealing with. Ours is a disease that stops us in our tracks, when we dont' want to be stopped. SO, don't let it. KEEP WRITING YOUR BLOG!! Just found it and there are SEVERAL people who come here to get motivation as well as see that they are not alone when having a bad day. Take Care! Amanda

  20. Matt Allen G says:

    I thought that quote was kind of cheesy to especially because people with other disease use it to so I modified a quote from the movie WATCHMEN:

    "I'm not stuck with MS, MS IS STUCK WITH ME!"

    Haha anyways, I'm glad you like my blog and that you find it useful, I plan on really stepping it up this year and producing some really helpful content and getting this blog more interactive! So I'll definitely keep writing!

  21. amanda feldmann says:

    LOVE IT!!!! Nice!!! πŸ™‚ I have never seen that movie…. I guess I must watch;)

  22. Matt Allen G says:

    :^O Whaaaaaaaaat? OMG It's a MUST see! lol

  23. sleekcartim says:

    Im confident you would qualify for food stamps if you present it right. PM me thru my YT channel for tips. You can do it easily online. also state emergency assistance $ indefinetly while applying for disability (ask your lawyer). thats how it works here. thats 500 a Month in benies. You prolly would qualify for housing too. dude trust me, you want to concentrate ur energy on that, not a job. sorry to say, but u seem past that now.

  24. Matt Allen G says:

    I have been trying for benefits but I always get turned down. I can get food stamps if I majorly bend the truth, I know just how to do it and I would get &90 a month. Whats the housing thing? Hit me up on Facebook, message me, Im not good at the youtube thing haha.

  25. sleekcartim says:

    hey man, you will do more than bend if you dont. dude you gotta do this, you deserve help, & need it, unless you got rich fam, even then, you would feel less of a burden to them. you dont do sugar coating? ok… loose the macho pride, this about survival. i get $200 mo in food stamps alone. Im extremely resourceful, i will help you. i dont facebook. gimme ur email addy (ive seen u give it b4 but not sure where on here). hurry before i forget who u are lol

  26. Jax says:

    Agreed. I was told that when applying you go for the worst possible day and write only about that, as if everyday was that bad. The fact you have bad days like that means you need help. So I agree up there^^. It may not feel right for you to do it but the end justifies the means. You deserve it as much as the next man, if not more than alot of people getting it.. You're a genuine case so only tell them about how you are at your worst. Also drill it in to your Drs. No more brave face. Make them see how tough things are. Fall apart in there. You need to shout and bawl and cause a fuss to get help. That's wrong, I know. Xx

  27. Matt Allen G says:

    I know your right it's just tough for me. But what I fear the most is I have heard horror stories of people getting caught mowing the lawn or some BS and then them going to court or wherever because "CLEARLY they are not disabled". I don't want to "live in hiding"

  28. Jax says:

    These people that get called out are cheating the system. You won't be though. You're not trying to get out of working, you want to work more than anything. You do deserve this help though. Maybe this new Dr can help with your claim?

  29. Matt Allen G says:

    The doctor can't do anything, it's all in the hands of the GOV, they sent me to their own doctor to get checked out and everything…. :^/

  30. Me again! says:

    After re-reading your comment, maybe you know or heard of genuine cases that happened to? Here it's only benefit cheats that I hear of. Also.. Here there are 'voices for carers' that can help do these claims. I personally had help from my sons nurse who told me what I needed to say. It's well known it has to be the way, having to fight for what you're entitled to? Scandalous!! Grrr.

  31. Jax says:

    …Who no doubt get paid by how many cases they can field off per day! It's all wrong. Yet ppl can pretend to have a sore back and get it, then use it to go on holidays etc. it makes me mad. How dare they make people, dealing with these problems, make them feel they don't deserve it or aren't bad enough?

  32. Matt Allen G says:

    I know of too many people who are cheating the system, using benefits they should even have, just existing off of benefits because they lied on everything. I don't like lying so it sucks that you have to say the right words in the right way to get what you should be able to get for telling the full truth.

  33. Jax says:

    I totally agree:((

  34. sleekcartim says:

    this thread about getting what you need legitimatly leads me to say (no sugar coat here) that you seem somewhat in denial about your health situation & what that means for you in the real world. You have very serious limitations, maybe not every day, but you need to get real help, & soon. put that pride & excuses aside my friend. We all would like to think positive, but you have to prepare for the worst too. i would hate to see you bedridden without previously signed up for ANY & ALL essential services. Get with a disability benefits expert, someone who advocates for ppl like you. The time for you to do this crap is yesterday. most services / benies take time to get. you may even need a visiting nurse or whatever in near future. sometimes family gets tired jumping through hoops for long term ill fam member when they have a job & house to run. have no illusions, it happens!

  35. Jax says:

    Maybe I did sugar coat it.. But I feel the same. You come across as if 'what if I get found out' when the reality is you do have MS, so therefore you are entitled to get it. You're a young guy so maybe don't mIan enough.. Didn't stress just how hard life is and how much this disease is limiting you. It's ridiculous how the system works so you have to do just get this crappy bit out the way, so you can get the help you're fully entitled to. It'll make life a little easier, give you the few dollars to do whatever. Please. Try again our way. At least we established on another post it's only cos I care I nag like a 2nd Mother to you. Lol.

    On a seperate issue… Not sure where it was mentioned but I agree about the donation button. Not that I'm any millionaire as you know but sometimes you may only need a small amount to do something you need to do. So it may help. I know you have your pride, we all do and want to be independent but even just for now. We all need help from time to time. There's no shame in that. It's worse to suffer in silence without a dime in your wallet. Haha.. Is a dime even currency? I have no clue what I'm talking about. Lol. Xx

  36. Matt Allen G says:

    I am not in denial of any sort, just playing the game in front of me and trying to play by that game's rules. I have a disability attorney helping me but it seems that if you are not bound to a wheelchair you hardly even MAYBE stand a chance of getting help and then if you do it takes years so it feels pointless sometimes.

    Ill consider the button again but I'm going to set a small amount like $1, $5, $10 if I can even do that. Maybe I can save some of that cash to help me do something to let me work and make some money of my own (like re-set up my photo portfolio for photography) or simply use it for new supplements I want to try since they are so pricey!

  37. Jax says:

    I think that's a great idea. Then it will feel easier for some people to help who don't have much, whereas before I'd feel the little I'd offer was no use. A drop in the ocean to what I'd Like to give.

    Remember I'm buying you a super cool car when I win the lotto though hehe xxx

    P.S I don't think you're in denial. You're just very honest and it's a shame the system's so rubbish that legitimate cases aren't getting what they need without having to bend the truth slightly. It was a Dr & Nurse who told me i had to write everyday as if it was the worst day though. Hopefully next time the claim will go through xx

  38. Matt Allen G says:

    Yeah I don't think my next one will but I will definitely change my description on the third go.

    And yeah Ill mess with the button but remember, I want a Toyota pickup truck, and I want a late 90's model. early 00' and then Ill supe it up with some of the lotto money hahahahaha jk!

Leave a Reply

Your email address will not be published. Required fields are marked *