Brain Fogs – What are they? How can you help?

Over the last few months Brain Fogs seem to come more often.  It is very frustrating that I am not as sharp as I used to be and I am sure it is challenging for ones close to me.  So, for those of you are lucky enough to communicate with me while I am experiencing a Brain Fog let me explain to you what is happening.

What is a Lyme Disease Brain Fog?

The easiest way to explain a Brain Fog is when someone experiences confusion, forgetfulness and lack of focus and mental clarity. The mind does not function as a normal person’s processes.  It can be referred to as a cognitive dysfunction and many things can influence a brain fog and the intensity.

Memory Loss

Short term memory loss with Lyme patients is very common and frustrating.  Short term memory loss usually plays out in the Lymie thinking of something to say, waiting for the person speaking to finish their statement, knowing in a few minutes you will be unable to recall the idea or what you wanted to share.  This is extremely embarrassing. This cognitive dysfunction can include finding the right word for the expression or sentence.  At times, I have to shake my head at what I am trying to say or feel at a loss when I am nicely reminded that I mentioned that “I was taking Thursday off” four times

Memory Loss in a Lyme patient can be as a far as forgetting where they live, who they are and even how to perform basic functions that doesn’t take normal effort to remember such a task, for example, brushing your teeth.  This should be second nature, but for a person undergoing severe brain fogs, brushing their teeth may seem foreign and they need to think of the steps carefully.

The less serious stages of Lyme induce memory loss, forgetting names, forgetting what someone to you, forgetting important dates, and even forgetting the basic things such as placing a fork on the dinner table.  It is also interesting to note that memories before Lyme happen to be much easier to recall than memories mad after a person has been diagnosed with Lyme disease. My memory is quite sharp for many things in the past, however, when it comes to recent things it is difficult for me to recall them or remember if I have shared with them with a love one.

Incapable of retaining information

In addition to struggling to recall recent memories at times, Lymie’s also are not able to retain the simplest information (meeting a person, remembering a name etc.). Even after going through extensive lengths to help retain simple information the brain is incapable of holding this information.  At this moment, this is not a challenge for me, but I know the day this comes it will be frightening.  To help me retain info to the best of my ability, I keep a notebook handy to take notes.  I thankfully am still able to work and it is very important I meet deadlines, am able to communicate efficiently during a meeting and communicate with my team.  The notebook allows me recall thoughts, jot down notes. I also keep a well-managed calendar to remember all events.

Concentration Difficulties.

Concentration is the brain’s ability to focus on a specific task, and of course the need to need to retain information takes a large amount of concentration.  Being unable to concentrate can have a great impact of reading (re-reading things over and over), communicating with others and the ability to work at times.  Because we have trouble retaining information, concentration is crucial so we can retain the information, but of course, if we have having troubles with our memory how can we concentrate when we forget something from five minutes ago?

The Brain Fogs have probably been the scariest for me as I can see the decline in my sharpness, memory and ability to focus.  To help ease the brain fogs, I keep a notebook handy to jot down notes to share with friends/family, or to discuss during a meeting so I can intellectually share my thoughts without making my Brain Fog visible to others.

Advice to Loved Ones

Be patient, and supportive to your Lymie.  Yes, the conversation may never have a clear understanding or you may hear the same things over and over, but remember to have some understanding and compassion to how we are feeling.  If we repeat things, just let it go. If we are struggling with communicating, give us chance to express ourselves and maybe help a bit.  If you implement these tools with your Lymie is creates a peaceful relationship and allows them to feel secure.

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A Few Life Lessons that Make a Chronic/Invisible Disease Manageable.

Struggling with a chronic/invisible illness can be so challenging but such a learning experience.  I have a learned a few things along the way and wanted to share them with the ones that are having difficulty.  I am not saying these are cures, but their ways to cope and adjust and I hope they bring you the peace and clarity they have provided me.

1. Don’t change more than one thing at a time.  I don’t know about you, but I’ve been guilty of adding multiple new supplements while trying something different with my diet and detox and then having no clue what helped and what didn’t.  Such a great idea, huh? NOT. If you are making changes keep a journal handy where you can jot notes down and change things one at a time. Give your body time to adjust: trying something for 2 weeks and evaluate.
2. Don’t go on a bender when you are feeling good.  There may be periods of time where you will feel great and be tempted to relax on your healthy lifestyle.  This may include eating unhealthy food, staying up too late, or pushing yourself too hard. You’ve worked too hard to get stable or into remission and going on a bender is the fastest way to relapse.  I am worst at this – there was no reason I had to vacuum, scrub the floors and do 6 loads of laundry because I was pain free last weekend. Guess what? This week I am paying for it. Even though you feel well, you must remember your body is still healing and a slower pace in necessary.
3. You might have to take two steps forward and one step back.  I don’t know if this has been your experience, but it has surely been mine!! Just keep in mind to not get too upset when you take those steps back.  Chances are, it’s just a low point and things will turn back around.  Focus on rest, hydration, an anti-inflammatory diet, and gentle detox.  A low point can also mean that it’s time to change the course of your treatment.
4. Keep a journal to track food, symptoms, etc. This has helped me so much. Anytime I have negative changes I jot them down in my journal so I can discuss them on my next visit with my LLMD. If you really want to know how your food, supplements, environment, and activity level are affecting you, you have to take notes.  This way, you can see patterns developing or find out if you have a food or environmental trigger to some of your symptoms or if that new supplement you are trying out is doing anything.
5. What works for one person may not work for someone else.You may have friends that swear by a Paleo diet or the GAPS diet or doing a particular doctor’s protocol but you have to find out what works for your body.  Each body responds differently to every diet. No bodies are alike.  Remember to do what works for you, if it’s not working for anyone else, so what? 6. Do your own research, don’t just rely on doctors to tell you what to do.Who cares more about you? You or your doctor? Who has more time to find out what is specifically going on in your body? You or your doctor? Doctors are a wonderful asset, but they are dealing with so many patients each day, they can’t possibly do the all of the research specific to your  You owe it to yourself to fully understand your condition and look at all treatment options.  Be an advocate for your own health and work WITH your doctor to get to the bottom of your health issues.  Don’t be afraid to bring them the latest research or protocols you hear about. If it hadn’t been for my own research and myself being my own advocate I would not be under the proper care that I am.  You are your own savior and it’s important to remember that.  If it hadn’t been for the countless time I countered a physician I would not have had the proper lab tests performed to determine a diagnosis.  You must not be afraid – you must stand up for yourself.
6. Don’t believe everything you read on the internet.Since I just told you to do your own research, I had to include this one.  I don’t even want to know how many hours I have spent researching and trying to figure out how to heal my body.  One thing I do know is that there is WAY too much information out there and it’s hard to filter what is sound and what isn’t.  Use discretion and find sources you trust.  Look for sources that are backed by scientific research, but don’t discount personal testimonies you read either.  Testimonies definitely have their place and can be quite encouraging.
7. Don’t be afraid to tell your doctor when something isn’t working.Doctors need feedback on the treatments they are recommending to their patients.  Chances are, if you are reacting poorly to something, someone else is as well.  If your doctor notices a pattern, they will be forced to dig deeper and seek alternatives.
8. Have a support system in place for the times you really crash.  This may mean stashing away some freezer meals, asking friends to help out with your children or house cleaning if you are bed-ridden, etc. Have some great novels on hand as well as a playlist of music to lift your spirits.  I personally post motivating quotes on Instagram every day. They inspire mw to keep pushing and to have a good day!
9. Make sure your spouse is up-to-date with your health issues and has done the necessary research to understand what you are going through.This will help them be more understanding and assist you in deciding which treatments to pursue in the future.  Life is hectic, so make sure you set aside time for this. In our house, we always do research when something new is happening to my body to determine what is – we do it TOGETHER! Why? So, we both understand. I also take time to express how I am feeling how or admit that I can’t unload the dishwasher that day.  Our communication and knowledge in my illness has allowed us to be a stronger.
10. Trust your instincts.If you have a bad feeling about a doctor or health practitioner or you don’t feel comfortable with a certain treatment, follow your instincts.  They are probably right! I had a bad feeling about a certain doctor and tried to ignore it because she came so highly recommended by a friend.  (And I was desperate to get well!)  Your instincts know YOU!! Listen to them.  Again, if I had listened to every doctor say I was healthy and nothing was wrong with me – I can’t imagine where I would be.  I trusted my instincts and believed them which motivated me to find all possible diagnoses.  Your body knows you better than anyone else!
11. You will meet many lovely people along your journey who you would not have connected with otherwise.I have been so blessed by the friends I’ve met at the doctor’s office, and online! When you share a common bond and can sympathize on the deepest level with another person, you can often become instant friends!
12. Choose joy.Each day, we have a choice to make about how we think and our outlook on life I want to develop a habit of choosing joy despite my circumstances.  Am I successful all the time? Definitely not.  It is something that is going to take discipline and practice!

 

As hard as these may seem, I hope you can try to implement them into your lifestyle. They have helped me so much in maintain peace with myself.

Please help fund my treatment.

I have created a campaign: http://www.gofundme.com/helpshymala.

Please help share my story and share my campaign so I can raise funds to continue treatment.

Thank you

Help increase Lyme Awarness with this simply task!

A fellow Lymie came up with a brilliant idea that we should all write to the Postmaster General to request a Lyme Disease Awareness postage stamp. You can copy and paste exactly what she wrote below and mail it to the address she included. Easy breezy. I’m all for raising awareness any way and anywhere we can!
Please help increase Lyme Awareness. It takes 15 minutes to copy and paste, address and stamp and envelope and toss it in the outgoing mail.

Here’s the template:

I am writing to you today to ask for serious consideration of a ‘Lyme Disease Awareness’ forever postage stamp. You may not be aware, but Lyme Disease is a growing pandemic worldwide. With the latest CDC estimates of new infections at 1 Million Americans / year we’ve got to spread awareness.

Postage stamps have a long standing means of doing just this job. While I know we can now customize our own stamps and print them at home, it’s not the same as an official stamp issued by the Postal Service. Plus, I know all the Lyme patients out there would collect these which would generate millions of dollars for your flailing service.

Please seriously consider our plea for a Lyme Disease Awareness forever stamp.

Citizens’ Stamp Advisory Committee
475 L’Enfant Plaza SW, Room 3300
Washington, DC 20260-3501

My Support Team….

I mentioned recently how important it is to have a strong support system. I wanted to share with you my support team and give them a shout-out so they know how much I appreciate them! #kickinglymesbutt # goteamshymala.  I love you all

My sister Faith — shes’s given encouraging words from day 1

My brother Justus – who has been the adult male role model in my life

         

My nephew Greyson – who brings so much joy to life. He knows just how to cheer you up on a bad day!

My biggest fan – my mamma. Hands down – She’s there EVERY DAY and from day 1 attending as many doctor’s appts she can. She is determined to better understand Lyme to help me.

                       

My Kevin – he’s picking up the pieces around the house on my bad days…

Lauren – she’s always checking in to say hi!

Nikki and Lauren – they are consistently cheering me on!

One of my longest girlfriend’s that calls and send’s care packages. 12 years of friendship

Heather — despite our busy lives, she takes the time to check-in and encourage me!

My baby girl – Mammas! She’s always by myside when I am not well – she knows sometimes before I do.

My silly Topaz –who brings so much fun to our house!

Promo – he too knows when I am not well and will glue himself to me.

“Faces of Lyme”

I have been featured in the “Faces of Lyme” organized by the Bay Area Lyme Foundation! It is such an honor they requested my story. Please view my bio: http://www.bayarealyme.org/blog/story/shymala-h/. Please take a moment to read other people’s stories as well as we all have a unique experience with Lyme.

So You Love Somone with a Chronic Illness – How Can You Be Supportive.

For people on the outside it can be difficult to understand what another person is going through no matter the issue. When speaking of Chronic Lyme Disease, there is so much to be understood not only those who know someone with it, but the person battling it as well.  It can be difficult to find ways to support your loved one, but it is essential for their healing. Please take these tips into consideration to be at the side of your loved one.

• Educate yourself.Learn about their illness with them so you know what to expect, what is happening, and how you can possibly lend support in finding a treatment plan that works for them. There are so many resources available to you today. Knowledge about the illness will make you feel more equipped, but don’t use it to act like a know-it-all.
• Validate. A major thing that will make a loved one feel supported through their illness is to genuinely validate how they are feeling. Let them know that you know there is something wrong, and that what they are going through is not how they are supposed to feel all the time. Don’t doubt us. We feel awful as it is and have been told hundreds of times by medical professionals that we are making it up, it’s in our heads, we are hypochondriacs.  We don’t need anyone else doubting us.
• Listen. Ask how they are feeling and be prepared to listen for a while. Find out about their private struggles and fears if they feel comfortable telling you. Allow them to vent, and hear their complaints with true concern and consideration. Our lives are a constant fight and despite how hard we fight, sometimes we just have days we lose it.  Be there to listen, or touch their hand.
• Sympathize. This one is a pretty easy idea, but may be hard to put into action. It is not pity. It is expressing compassion for how they feel. This may be better done through actions than through words.
• Encourage. Provide meaningful emotional support, encourage them in all their efforts to find wellness, and cheer for them when they seem to lose hope. However, be gentle in your encouragement. Don’t make it sound like they can do whatever they put their mind to, as this will perhaps discourage them and distance you from them.
• Have patience. One of the toughest things about having a chronically ill loved one can be having patience. This may be one of the most important things you can do though. It is easy for them to get frustrated with how they feel, but you must be patient. The lack of patience can truly turn your relationship into a negative one.
• Help out. Simple, and very do-able. Someone with a chronic illness can easily feel overwhelmed by their daily tasks. If possible, find something small that you can do to help. Find ways to lighten their load. You can be a greater aid than you (or they) may realize. Some days my fingers hurt so much I can’t peel an orange or open my water bottle. It is incredibly helpful when you help me without asking.
• Be positive. It may be hard for your loved one to be optimistic, which is understandable when they are fighting a daily battle and feel like they’re on the losing side. So it sometimes falls on you to be the voice of hope. As above though, remember to be considerate in your positivity. The last thing you want to do is invalidate how they are feeling.
• Be proactive.There are always new things to learn. Seek out answers. Try and help your loved one take charge of their treatment, and not be passively in their doctor’s care. Assist them in actively looking for treatments. You will likely discover more solutions together.
• Get connected.There are literally thousands of online support groups full of people just like you who are looking for (and sharing) insight from others going through the same experiences. Connecting with these groups and people can be tremendously useful for finding tips and tricks for coping or keeping updated on medical innovations that you can share with your doctor (remember, be proactive). Lots of times support groups have local chapters that meet and get to know each other on a more personal level. This is a great option if you don’t have access to the internet or would prefer the face-to-face contact.
• Remember yourself.It can be very easy to forget all about taking care of yourself when you’re concerned and caring for someone else. It’s important not to lose yourself though. Take some time to indulge yourself. We all need “me” time occasionally.

Take some time to review these tips and apply them to your loved ones. It makes a big difference in our days. You want to be supportive, so what’s the harm in implementing them into your relationship with your loved one.