Tamara

@tamarathr

The Little Things That Are Hard to Deal With Multiple Sclerosis

Don’t sweat the small stuff. That’s how the saying goes, right? But what if the seemingly smaller aspects of your life are actually the ones that drive your engine and spirit? Life with multiple sclerosis is not easy. Energy is to be rationed. The odd and sometimes agonizing sensations never cease. Pain is constant. The quantity and quality of vision and mobility is negotiated on a moment-to-moment basis. I had a bad relapse that once caused foot drop, prohibiting me from walking straight, as my left foot dragged behind me. Blurred/limited vision is a regular occurrence. Vertigo surprises me often. These ailments were and are incredibly difficult to cope with, but I feel oddly energized to fight them and continue on. A fear of a life-altering relapse is certainly real but it’s the seemingly more benign day-to-day sacrifices on the altar of MS that are the hardest to make peace with: When my children play make-believe, often the “Dad” character is resting or napping, as opposed to working or going out for a run. I’ll never return from a day at the office to be greeted with smiles and elationfrom my wife and children, because I’m always already at home. As for my career, when I “medically retired” in 2010 there was no farewell party, Ijust disappeared into thin air…many of my co-workers unsure of why and where Iwent. All the years I spent earning my stripes and building my brand, literally vanished overnight. There is never an extended period of time without doctor appointments, treatments, medical tests, phone calls or paperwork…each one a reminder of my chronic disease. When out with my wife or friends, it’s embarrassing to be the one that needs theopen seat since standing on my leg causes so much pain. If I’m not overcome by vertigo at a grocery store, I’m usually tired out halfwaythrough a shop with the family. Most weekends, trips, holidays or large events are strategically planned with myhealth limitations in mind. This small stuff stings the most. In each, I feel like little parts of me – myessence – have been stolen away by MS. I loved to work, interacting with others, providing value for great companies – and was proud of my accomplishments. And it saddens me that I can’t teach mychildren the value of a hard work ethic within a career setting. My career wins weren’t quite Michael Jordan or Peyton Manning but similar to a retired athlete, my children have to hear about my “playing days,” instead of seeing it live, in-person. When we started a family, my goal was to raise our children in an active setting.  School came first – getting a solid education is paramount. But being a well-rounded person is, in my view, even more important. I want my children to be ready to fly when they leave the proverbial nest and beyond excelling at schoolwork, I wish for them to thrive at oral and written communication, the arts and athletics. I dreamed of running with my kids, coaching their teams…leading by example.  My drive to be active remains – but instead of going for runs or playing racquetball, it’s going for walks or a swim. I dreamed of being the kind of father whose kiddos viewed with awe – as I drove away to that mystical office for the day but then came home at night and helped them with their schoolwork, coached their teams and attended their activities.  Each weekend would be packed with an abundance of activity and loving memories together. As a husband, I desired to a provider, protector, comic, part-time cook and although I can’t put a nail through wood, I’d compensate by calling a handyman instead, all while helping to carry the load in householdplanning, chores or errands. Like anyone, I wanted to have it all. Living with MS, you realize “having it all” is no longer some grandiose vision but is found in the small stuff like any moment when I can see clearly and walk strongly over to one of my kiddos and give them a hug. So, I’ll continue to sweat these small things. Some days they sting more than others, but I can’t let them diminish my spirit because – in the end – I refuse to sweat the MS. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Chalabala

Community Voices

Struggling in Canada

My son and I both deal with anxiety and depression. He is really struggling and has been for a very long time. He stays in his room all the time watching Netflix and sometimes gaming. He has no self esteem, has had suicidal thoughts but never a ‘plan’. My brothers approached us yesterday. They want to send him to a very good facility for help (it is a beautiful place). He will be there for 2 months. My son said he is willing to go but he is very nervous. He is 22 but very ‘young’…no real life experience.
So we’ve been very overwhelmed and trying to digest all of this. I am so thankful for my brothers. I think they are saving my sons life ♥️. Just wanted to share.
#MentalHealth #Depression #Anxiety

19 people are talking about this

Why Trauma Survivors Can't Just 'Let It Go'

It seems the deeper I journey into the healing and recovery process, the more I find that much of our cultural and conventional wisdom does not help trauma survivors. All the trite platitudes and sayings that might help someone having a garden-variety bad day can actually become giant triggers for someone living with trauma. Let’s assume everyone wants to live a healthy, pain-free, abundant and productive life. There are hundreds of motivational books and centered on “fake it ’til you make it” principles, which encourage people to “think positive,” “let it go,” “don’t sweat the small stuff,” etc. They may have helped some people. Judging by book sales, they have probably helped many. Yet, for many trauma survivors searching for relief, these books and motivational coaches don’t help. In fact, many, like me, feel more depressed, broken and impossibly disconnected after reading them. Here’s why. Trauma survivors are often highly motivated people. Many are conditioned to be hyperaware and hypervigilant out of survival. They are often overly critical of themselves because they were held to impossible standards by their abusers, and their attempts to please them often went sour. Some become overachievers, yet never feel like what they achieve is enough. Because nothing is ever good enough to appease an abuser, some survivors give up trying, becoming the self-fulfilling prophecy of whatever their abusers told them they were. Many survivors internalize that they are “lazy” when it’s not a lack of motivation that keeps them from their goals, it’s trauma. Trauma causes the nervous system to fight, flee or freeze, and for many survivors, their bodies are either stuck in one of these, or alternate between the three. Holding this pattern together is a web of toxic shame that is extremely difficult to break. Think of a race car stuck in first gear, with a foot on the gas and a foot on the break. That’s how many survivors get around. To a survivor, telling them to “think positive” sounds cruel. I mean, that’s exactly the problem for anyone recovering from psychological and emotional abuse. Their thoughts were hijacked by someone else, and now they are fighting for their sanity to get their own thoughts back. And it’s not just their brain that was taken over. Emotional trauma gets hardwired into the physical body. Not only does it cause mental anguish, it creates a lot of physical pain, which can sometimes morph into serious long-term disease. Doctors and scientists are currently making great strides in connecting the dots between trauma and disease, but the general public is years behind in understanding and accepting this reality. “Positive thinking” shields the reality that sometimes people feel shitty. In order to heal, survivors need to let down their shield and feel their feelings. Here’s the other problem when a trauma survivor feels pressure to “think positive.” Often, for a survivor, this can sound like it’s not OK to feel whatever they are feeling, so they stuff it away, often relegating it to the subconscious. Trauma survivors are experts at burying their feelings. But burying feelings doesn’t mean the pain goes away, it means the survivor is less able to access what they need in order to heal. Many survivors experience dissociation. Dissociation is a common coping mechanism that needs to be broken by actually facing the terrible thing that caused so much terror that mentally “going away” was the only option. Similarly, minimization plays a huge role in coping, either by the survivor or the people around them. Usually, it’s both. “It’s not that bad, ” or “It’s not as bad as X has it…” is not only a huge roadblock to recovery, it’s a road block to being aware of the trauma in the first place.  So, when a survivor decides not to “sweat the small stuff,” the small stuff turns into a giant, insurmountable mountain of shutdown feelings and emotions. Getting into a pattern of not speaking up, whether to keep the peace or to avoid uncomfortable emotions means more skeletons for the pile in the subconscious mind. Survivors need to pay attention to the small stuff. Here’s another one. “Just let it go.” If only it were so simple. If survivors could, they would gladly be doing it. While this is actually the end goal for resolving trauma, it often gets waved in front of the trauma survivor’s face like some shiny, magical, yet unattainable talisman. Too many people are trying to let go of trauma they haven’t yet fully grasped. To let go of something means you need to be aware that you’re holding it in the first place. Trauma that is stored in the locked closets and cupboards of the subconscious mind continue to control from within, often without the survivor fully understanding what’s happening. The process of letting go can’t happen until those things are dragged into the light and fully processed. Once again, that means feelings uncomfortable feelings. It means grieving. It means giving yourself the kind care and attention that no one else did. Sometimes, it means wallowing for a little while. The harsh inner-critic of a survivor usually doesn’t allow this for very long. It means sending the critic away. It means bringing all of our subconscious thoughts into our conscious awareness to objectively take stock of what we’re working with. So, next time you feel compelled to encourage someone to “let it go,” don’t. Instead, see if you can encourage them to lean in to whatever it is and feel it. Letting go will happen in its own time. That is, if you allow them to give their brain and body what it needs to heal.

Community Voices

Texas Heat

<p>Texas Heat</p>
28 people are talking about this
Community Voices

Massage?

For my birthday my mom got me a gift certificate for a 30 minute massage. I’m nervous because I have #PTSD and I don’t know what to expect. I’m an assault victim and I don’t like being touched. Has anyone tried massage? #Anxiety #GeneralizedAnxietyDisorder #Trauma

89 people are talking about this
Community Voices

What was the defining moment or incident that made you seek treatment for MS?

<p>What was the defining moment or incident that made you seek treatment for MS?</p>
16 people are talking about this
Community Voices

What was the defining moment or incident that made you seek treatment for MS?

<p>What was the defining moment or incident that made you seek treatment for MS?</p>
16 people are talking about this
MS Blurt
MS Blurt @djbk7716
subscriber

The Amazing Way I Got the Wheelchair I Couldn't Afford

This is going to be hard to outdo. You know when somebody does something nice for you and you want to pay it forward? Well, in this case, I don’t know if that is possible. I’ve been sitting on the same wheelchair for 18 hours a day for the last nine years. My wheelchair has seen its best days. I’m surprised he works at all anymore. I’ve always wanted to keep walking for as long as I could. Now at the very least Iwant to stand. I happened to see a wheelchair I fell in love with instantly. It would stand me up. “I must have this,” I thought, so I went about broadcasting it to anyone and everyone who would listen. I made it clear in no uncertain terms that I would get one. Yes, I was getting one. No matter that the cost was far out of my monetary reach… I just had to have one. It just made sense. So the first thing I did was started GoFundMe campaign. I knew the goal was high, but I wasn’t really thinking about that. I was extremely focused on the fact that I needed this wheelchair as much as a person needs to breathe the air around us. I have a very good friend I have known for a long time. We speak daily, sometimes more than one time during the day. He’s taken me with him to a farmers market in Phoenix, for a walk about downtown when it was about 150° Fahrenheit out and also took me with him when he moved to Hawaii. Once there, he took me with him on numerous walkabouts — all video — through his phone. One time we sat at the top of Rainbow Falls in silence just appreciating his awe-inspiring paradise. Another time, he took me swimming with the 100-year-old sea turtles. I was in Hawaii, virtually of course, but still visiting his postcard life. He often pointed out that it felt like he was living in a postcard. Well, I have to agree with Jon on that. These outings mean so much to me, and although I have thanked him many times I don’t even think he realizes how much serenity and pleasure this has brought to me. I made it happily through the last year and a half of my life enjoying thesetrips — journeys I surely could not have done as successfully or at all on my own. Pretty much every day we share a coffee together — usually around noon. One day, I got up at my usual time, 6 a.m. I opened my computer to a message that said, “Please give me a call, I can’t sleep.” Hawaii is five hours behind us, so it was 2 a.m. there. Automatically I wondered what was wrong. Now I have to explain that my friend Jon had had an item on eBay for trade for some time at this point. He said he would trade it for something he found interesting. Offers came and went over the years but nothing struck him as being the proper deal. So one day, or night in this case, it all came together for him when he thought about my wheelchair and how my GoFundMe was not collecting the money it should’ve been. He had a bright idea: Why not try to trade his item for the wheelchair his friend so desperately needed? So he put the email together and sent it to a few of the sellers and suppliers. The owner of one of the companies in Hong Kong emailed back, and the deal was accepted. I went ahead and called to see what was going on with the urgent message on my computer. John then told me the story about his watch on eBay. My mouth was wide open, not really believing a word of this amazing story. Apparently the wheelchair I had wanted, needed desperately, was mine — to be shipped over shortly from the docks of Taiwan. This all started a little more than six months ago. Fast-forward and now, almost the end of December,  my wheelchair has arrived in Toronto. Now you understand my question: How can I repay this incredible selfless deed? Oh wait, there’s more. Both of us have been diagnosed with multiple sclerosis and have felt the effects of this often devastating disease. Thank you, Jon, from all of my heart. We want to hear your story. Become a Mighty contributor here . Getty image by AVAVA