RobinB

I am new here to this site. I was diagnosed four years ago. I need to be on with a group of people that understand. I just cannot deal with the overwhelming sadness and ring and this feeling sorry for myself. That is not me. I don’t know who me is anymore. I don’t think my family understands this illness and how it zaps my energy and mood. I still can get around but my balance gets off. I have always been the caregiver as my husband has non-hodgkin’s lymphoma.

My daughter lost her husband year and a half ago in a tragic accident. She is bi-polar and needs my help with my now three year old Granddaughter which that child is my saving grace. Her smile and love for me helps to keep me here. The sad thing is my daughter is jealous of our relationship.

However the stress of my daughter and husband and their needs for me to be like I used to be I cannot. I am stressed and cannot sleep and my fog brain makes my unable to do much. I don’t like feeling sorry for myself. They both tell me, I already told you that or why can’t you keep up with a day planner. My head is swimming around all the time.

I have trouble keeping up with the bills and grocery shopping as since it is hard to go to sleep I don’t get up until 2:00 in the afternoon. I feel like it is Groundhog Day everyday. If I did not have a dog to give me the unconditional love I need don’t know what I would do. My daughter says I stress her out. Her highs and lows and money spending have me very scared.

I am rambling here. I love life, I love people but I am not the same person, that person is gone away. Well I have complained enough here now, usually a very private person and do not discuss personal business especially online.

I just need to understand better how to cope with my family,

RobinB

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Comments

View Comments (6)
  • Mstfrgfwrd
    2 years ago

    Our families, no matter how loving and supportive, sometimes just need to better understand “us”.

    Venting also helps with stress and emotions. Private person or not, you’re surrounded by people who get you. Let it out. I wish you well.

  • Lowdramamama
    2 years ago

    Robin – I forgot to add that I am also on Sertraline (Zoloft) for depression (been on anti-depressants since age 29); AND alprazolam (Xanax?) .50 mg PRN not to exceed 4/day.
    My psychiatrist has taught me far more about brain health than my neurologist. Sadly, my rockstar neurologist that started me on G – has moved out of state

  • Lowdramamama
    2 years ago

    Hi Robin – Thank you so much for sharing. I cannot begin to understand the grief you & your family have been through.
    But YOU need to take care of YOU! I always feel so much better (and vain!) after I’ve gotten my hair highlighted & cut, a mani/pedi, & the occasional facial for my 56 y.o. face!
    New undies & bras don’t hurt either…
    I was dx’d in 1985, age 25 w/RRMS. I do not know, how for the next 25 years, exactly HOW I REMAINED IN SUCH DENIAL about my diagnosis – whether it was buried so deep that I NEVER EQUATED OBVIOUS MS SYMPTOMS like numb toes/feet: my shoes are too tight or I laced them up too tightly.
    Couldn’t regain bladder control after birth (age 28) of my 3rd son…common w/MS…but everyone said, ‘Oh he’s such a big baby – he traumatized your bladder” which I accepted as fact. Had numerous trip ups & less than graceful FALLS – b/c I was such a klutz, right? My Depression & fatigue were obviously passed on from my parents, both alcoholics. My dislike of being hot? That’s just the way this Texas girl is…
    it wasn’t until I started having major cognitive issues, i.e., that I thought well MAYBE I needed to see a neurologist!!! duh. It had only been 25 years since I saw my 1st neuro – and when back then, ANY MS MEDS- were only in our dreams.
    Got into UTSouthwestern Dallas’ MS clinic, dx’d immediately with SPMS, & MRI showed a thumb sized black hole top of brain and a lot of very active disease going on. Even though GILENYA (the FIRST ORAL DMD for MS) hadn’t quite been FDA approved and it was formulated for RRMS – my awesome neuro wanted me to start w/that.
    However, I couldn’t begin G until the inflammation (think forest fire) was put out…and that meant serious oral steroids (still on fire), then a specialty pharm in Dallas mixed me a cocktail of LIQUID (for an IV) steroids that I downed like a tequila shot! (Fire still burning)and the final trot, 7 rounds of plasma apheresis finally extinguished the fire!
    11/2010 I started G & since then MRI’s have shown no new or active dz! But b/c I “did not have MS” for those 25 years, (remember???) – the result was A LOT of collateral damage – i.e., “innumerable” lesions. Enough of me.
    For my extreme fatigue, my psychiatrist prescribed NUVIGIL, which gets me out of bed and allows me to think & function! Seriously, it is my life saver. I take the highest dosage (my body metabolizes Meds quickly), which is 250mg in the a.m., another 250mg early afternoon. Otherwise, I’d be in bed until at least 2 pm. He also has me on high quality Omega 3’s; Vit D 3-10,000 IU’s; B 12 w/folic acid- 5,000IU’s, multi, AND I also am on HRT-Estradiol (natural estrogen) – which also has been used in MS trmt w/good results!
    I apologize for turning this into a novel – just know there are many, many MS’s like you, & me! I will pray for you. God never meant for us to handle this difficult life alone.

  • freedom
    2 years ago

    I completely understand and please know you’re not alone. The advice given below is spot on. You must learn how to take care of you first. I don’t say that lightly as you have more than enough to handle. I will keep you in my daily thoughts.

  • trmuth
    2 years ago

    Robin, it maybe time to consider your needs first. As a fellow giver/pleased I understand the difficulties of setting strict boundaries with our loved ones. You like your daughter have illnesses that have treatments. Your daughter needs to keep to med plan and take responsibility for raising her child. You should be grandma and enjoy being grandma without the responsibility. Perhaps it time you seek some outside help with grocery shopping and billing. First and foremost learn to say “no” and be ok with that. My prayers go up for your strength and relief. God Bless.

  • TltMMT
    2 years ago

    Hi Robin, I too am new to the site. (Since 3/19/17). I was diagnosed 7 weeks ago after a major fall. I busted my forehead, broke my nose, broke my radius bone, dislocated ulna bone at wrist and tore tendons. I fortunately have a full time job, because my part time job is massage therapist. This is my passion and haven’t been able to do massages until my arm heals. My mother has Alzheimers and fortunately my father has been the main care giver. I hated that the two weeks I stayed with them, that he had to take care of both my mother and I. I live by myself, and like you my fur baby keeps me going. I am sorry that you have to be a caregiver to your husband, daughter and help with your granddaughter. I can’t imagine the energy it takes to do all of that and try to take of yourself also. Praying you take more time for yourself, so that you have the energy to help the rest of your family. Praying you can find someone that can help you with some of your chores.

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