Just getting Real with Ya’ll, Sometimes a Girl’s Gotta Vent.

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Today’s post titled: Just getting Real with Ya’ll, Sometimes a Girl’s Gotta Vent. Yep, that ugly picture is of me 1 minute after I just got a call from my mother in law tonight saying my husband ( aka @ConsumerKing) was curled up in a ball in pain at her house. I have been struggling for a really long time about whether I should post personal stuff on my blog. I know I shared about our flood but this kind of thing is just different for me. I don’t have the time to start another family blog and I think it’s time I start letting you guys in. I have so many emotions and feelings right now that I am even having a hard time writing this post.

For those of you who don’t know, my husband has a degenerative disease called Ankylosing Spondylitis. When I go to conferences, I hear people say Melissa, I don’t know how you do it. You work a full time job, have 3 blogs and your a caregiver. I usually just smile and say well you just gotta do what you gotta do. I am the type of person who feel’s like they can’t let anyone down and I am afraid to show that I need any help. Im afraid if I cry in front of someone or my family in my own mind I feel like i’m some how a failure. I walk away smiling but sometimes, (mostly recently) I am sitting behind that computer screen just bawling.

The last 3 months have been the worst. Daniel has gotten worse and his meds aren’t helping like they used to. One of the meds that he takes for shooting pains in his legs have really bad side affects on him. Some days we stay home and don’t go out because I feel embarrassed because he’s slurring his words and can’t even hold his eyes open. People see someone so young like him and automatically think druggie or alcoholic. How horrible is that, that I feel like that. I feel like i’m in a battle with myself with my own emotions between feeling what’s normal and feeling bad that I feel that way. Am I making any sense? Some days I can’t even look at my Facebook or answer the phone. My friends and family are so sweet but even just reading there kind words sets off water works. Like today I refused to read my updates while at the hospital because I didn’t want to cry in front of my father in law. So I just waited till I could go home and read them in quiet.

Daniel refuses to let me quit traveling. He says we can’t let this disease beat us. He also says its my stress reliever , when I’m away I don’t feel like I have to run around the house 90 miles an hour till I completely pass out. I still feel guilty but once I leave he is right, seeing my friends if only for a moment I forget what’s going on and it gives me a refresher so that I am ready to go home and hit it hard again.

One of the hardest thing for me is keeping friends. At least ones that are local. With this disease and our busy schedule we don’t get to do things with people that often and when we do people get tired of last minute cancellations so sometimes I think they just quit asking. It’s totally understandable but it’s not something we can help because we never know when a bad day will come. I feel like I have more online friends because I know I can never really let them down.

I have even seen myself regress online a little bit as well. I can’t handle anymore negativity or drama in my life so I have even stopped logging into Skype groups and participating in Facebook groups less and less. Even when I talk to family, I find myself just wanting to hang up the phone when they start griping and complaining. I feel like I’m gaining patience for this disease but losing patience for the world and I hate that.

I’m going to stop for now as I could go on and on. Most of this I have finished writing while sitting here in the ER to keep my mind off of Daniel screaming in pain in bed across from me. (Update, they have admitted Daniel to the Hospital to keep an eye on his liver. They say Renal failure but don’t want to scare us because it could be due to just dehydration. I’ll keep you informed)

Two shining moments tonight though: A lady came to me in the ER and said I am praying for you. I have no idea who she was but I thought how sweet of her to take time out to say that when she’s in here with her own family. Also Daniel did have a moment to crack a funny, he said ” Honey if menstrual cramps are this bad I am so sorry” lol! What’s even funnier is I think he jinxed me because guess who came to visit today? YEP!

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63 Comments

  1. God bless you and your family. I honestly don’t know how you manage to do all you do and care for a sick husband. You will be in my prayers.

  2. My prayers re with you and your family……..I’m sorry your family is dealing with this…..thank you for all you do

  3. I feel your pain! Facebook and blogs are wonderful tools and remind me of those I need to pray for daily. You need to get it out sometimes so vent away!

  4. Prayers for healing for your husband and for strength for you. I took care of my sick husband for 11 years before he died 2 years ago. He had brain tumors and I was told by a doctor that he might live 2 years, with my care and God’s grace I had him for 9 years longer than the doctor thought. I did find out thru his illness, that you do have to take time for yourself to recharge the mind. Thoughts and prayers for you.

  5. God bless you and your family! People have no clue what sickness does to the caretaker.:( We are expected to be strong,when sometimes we need to be weak,we need someone to hug us and tell us it gets better(even if it’s a lie,we still need to hear it)

  6. My prayers are with you, your hubby and doctors! It’s good to share your hurts …. Allows others to pray and I believe in the power of prayer!

  7. Wow! You are AMAZING for doing so much for us when you have so much going on at home! I am praying for your husband and your family.

  8. Hope your husbands feeling better. Hang in there I know how hard it can be trying to juggle everything in life. But in the end it will pay off.

  9. I’m glad you shared. I appreciate your blog. It helps my family.
    I’m sorry you are going through all this. I know it hurts to see someone you love in pain. Chronic pain is SUCH a monster.
    I wish you peace and blessings. 🙂

  10. I am so sorry for all that you are having to go through. I know they say sometimes we have to hit rock bottom before we can be back up on the mountain top. Do you attend church? I am a true believer in the power of prayer and I will pray that this stress is lifted and your hubby’s pain is gone. Have you been to see your family Dr.? Don’t be ashamed to go see him and let him know what is going on and tell him you need something so you can emotionally deal with all of this so you don’t drive yourself crazy.
    As far as not going out, WHO CARE’S WHAT OTHERS THINK? Don’t stop living your life or letting your husband enjoy his life because of what others think. So what, they have no idea and it is frankly non of their business. If your friends know you and the situation you are both in they totally understand having to back out of last min. plans. If they don’t understand, then they are not your true friends. Friends are there for eachother especially when times get tough.
    Hang in there! Prayers and Hugs!

  11. Hey you as a caregiver YOU have to you MUSt you need to take time for yourself YOU must have some fun!
    being a caregiver is very hard! Look at what Matt goes through with my cancer! Allow others to help you out.!
    people in public are JERKS!!!! they always think the worse of someone and not that they could behaving a medical issue , how many times have we seen an overweight person on a scooter in the store and thought well if she would just walk she could lose the weight. Maybe she cant just walk maybe she just had surgery maybe she too has a muscle disease. people are to darn judgmental! itis so much easier in this word to Judge people then to accept.
    I am getting ready for yet another surgery losing my right breast now but when I wake up I should have 2 new cancer free ones. But yet here comes Matt to ba a caregiver we should be having fun on vacation NOT taking care of me .Last year was another horrible health year for me I could not even stand up on my own. I see how hard it is on Matt and Sara to have to help me out I know they just want me back and Ijust want to be back BUT for some reason God knows why this is happening. he gives us friends who are caregivers to talk to and out of all your blogs and stuff you need to caregivers support group! You need to talk to others who understand People who do not understand what it is like to care for a chronically ill just do not get it. FIRST you need to stop being so hard ON YOURSELF!!! Be thankful that He is getting love and care while you are away!! I know he misses you BUT he KNOWS you need ME time!
    When a caregiver does not get ME time then a caregiver gets cranky depressed and starts to regreat the life they now are faced with. caregives MUST have a battery recharge and with all the tech stuff that is out there if you want him at a red carpet event then turn skype on and LEt him share init with you!
    YOU are allowed to get angry mad frustrated over whelmed! that is natural that means you are human NOT perfect and until YOU can walk on water do not worry about the perfect part. Take time for M take time to laugh to giggle to take a walk to just be alone!
    learn to delegate responsibilities when you work at home it is just like going to the office boundries have to be set. if you work from 1 to 5 at a regular job would someone be with Daniel while you were at work? SO then WHY are they NOT just because you work at home doe snot mean you are free to do other things. just means you get to work in your jammies!! lol
    Accepting help DOES not mean that you are not juggling stuff right It means you are damn lucky to have people who care enough about you to want to help. LET them help! STOP beating yourself and stop being so hard on yourself it is freaken hard what you do . allow yourself time to be YOU!
    I love you all and keep ya in myprayers!

  12. Im so sorry for what your going through.You are a strong women and there is nothing wrong with getting some help.Just remember that.Prayers your way!

  13. Melissa,
    I am so glad you put this out there! I am a mother of 3 kids and a disabled husband as well. When I am not taking care of them and running around, I am taking care of him. He has an auto immune disease called EOE for short too long to spell now. So in a sense I know exactly what your going through. I too had trouble dealing with a husband who was sick all the time. A friend of mine found this book for me which now I am going to recommend to you! It may or may not help you but I just want you to know that I am here for you if you ever need to vent or just someone to talk to that has been in a similar situation. Until then I will just pray for you! It is called When the Man You Love Is Ill by Dr. Dorree Lynn and Lorence Isaac’s. You can find it on Amazon for cheap. When the Man You Love is Ill is a woman’s guide to living with a partner facing a medical crisis or chronic illness. How do you understand the male psyche? How do you manage your own feelings of fear and guilt? How do you deal with the loss and keep the family stable? This book helps to heal the relationship with their partners or spouses.

  14. I will be praying for you and your husband. It’s nice to realize the people behind these blogs are people just like us. Too many readers don’t grasp that. I’m happy to read your husband seems to be in good spirits and jinxing you 🙂

  15. I’ve been sitting here for a few minutes trying to figure out what to say to be helpful, inspirational and/or supportive. I can not imagine how hard this situation must be. I was sitting here having a good cry over something that isn’t nearly as serious as what you’re going through and felt a little childish. I will be thinking about you and your husband. Hang in there, God is in control and never gives you more than He thinks you can handle!

  16. Sorry to read about all the trials you and your husband are going through. Most people don’t realize the stress that caregivers go through, I know I didn’t until recently. I will be praying for you and your family.

  17. Melissa,

    I am praying for you. I understand how hard it is dealing with a spouse’s illness. Though my husband is not as severe as yours-he suffers from Moya-Moya and was permanently disabled in a work semi accident in 2005. It is totally okay not to want to deal with negativity and drama from others when you see it for what it is. The one thing I had a hard time doing was accepting that it is okay to cry, vent, and let things out. Do not do this-I ended up having a nervous breakdown in 2009 and have not been able to work since. I wish I had listened to those that told me I don’t have to do everything. I know it is hard when you feel like you are letting people down but it is okay to SAY NO and take time for yourself. You are an awesome wife and person – you are there for your husband and have never left him. That means a lot now a days and I am sure means the world to him. I am praying for you and feel free to email if you need encouragement.

  18. I don’t personally know you, other than through your awesome ConsumerQueen site. But I am going to add you & your family to my daily prayer list! Some where in this all, God has a big plan for you & your family! God Bless.

  19. My prayers for all of you….you have God on your side, that in itself is powerful medicine….and let yourself cry. I was like you and have gone through some major things in my life recently….when I stopped being “brave” and let some of that emotion out, I felt much stronger. You are human not God…we already have one of those!

  20. Hugs – we live a very similar life only my husband is the caretaker. I refuse to let what others might think stop me from living. It’s their loss if they only see a fat woman with sometimes slurred speech and difficulty walking. I’m a sweet, kind, and caring person and if they can’t see past my physical ailments then they’re someone who doesn’t deserve my time.

    I wish you both wellness and happiness.

  21. Even in that short bit you wrote, I completely understand what you are going through. It sounds a lot like me and my situation. My husband has chronic pain now for two years. He can’t work, his medication sometimes makes him slur his words and very sleepy. It is hard, things have happened that I would rather not put out there for the world to read, but it is something that not many “normal people” would understand. They don’t understand our issues, they don’t understand him. It is not easy. Keep your chin up and don’t run yourself ragged. find that one person who gets it or who is a good enough friend that she doesn’t judge, and let her in on things you are going through. This helps me at times. Talking to my husband helps too. God is gracious and kind and has a perfect plan for you and your family.

  22. Praying for you and your family, Melissa!! It’s hard sometimes, but if God and Daniel are pleased, try to ignore the naysayers/impatient people. I understand it’s easier said than done.

  23. Wish i was there with u… I have m.s. and have slured Speech also most of the time i walk like a drunk or with my walker..im only 54! But my Children have always been by my side along with My Jesus!!! Hope the best for ur husband and You! Im keeping both of u in my prays!!

  24. You have every right to vent, you are going through so much. It makes our problems seem feeble by comparison. You, who have done so much to help out other families, need some support, even if it only from your blog followers. You cannot do it alone, and I am sure your family understands if you need to break down and have a cry now and again. As far as going out with your husband when he is having his bad days, just remind yourself that you are probably not going to see most of the people you see out again, and if you do, they are probably already people you know and who have at least a small understanding about your husband’s condition, so go out and enjoy each other when you can. We will pray for you and your family, and hope that your husband’s symptoms get better.

  25. I think of you and brave Daniel often, and wonder how your kids are doing. Personally I find a great stress release in watching a good tear-jerker movie, just letting the tears flow because of some fictional character, and I feel so much better afterward!

  26. We think our issues/problems are so bad and don’t realize that others have it worse. I believe GOD dosen’t give us anymore than we can handle and there is a reason for everything. Hang in there. My hubby and I will pray for you and yours. xoxox

  27. You will be in my thoughts and prayers… I hate to hear people judging your husband because of his medical issues and the meds he takes. I know full well how that feels myself and it is no one’s place to ever judge another.

    Please take your ‘me’ time. That’s what keep you going. Say no when you can and yes when you feel like it. You don’t have to be perfect and it is OK to be angry, upset and to cry. Slow your schedule if at all possible and enjoy the small things , the good days the pain free days.

    *hugs*

  28. Melissa, I am here for you if you ever need ANYTHING!!! I know how hard it is to open up online as I did it recently when I had a cancer scare of my own, but opening up to my online support system was one of the best things I could have ever done. People I didn’t realize cared about me came out of the woodwork and that support got me through and helped me realize that I wasn’t alone. You are such a strong woman and I think I’m not the only one saying, “You are not alone!” Praying for you and Daniel!

  29. Melissa our prayers are always with you. I hope you know you can call me anytime if you need to vent! (((hugs))) Chan

  30. Sorry to hear about your husband. I hope he feels better soon. Thank you for the website it’s my favorite. Just remember one day at a time.

  31. Wow, your post really affected me deeply tonight. Though we’ve not met, my husband and I live on the other side of the creek & remember well “the flood”. My heart goes out to you and praying that God gives you strength and that your husband will be feeling better very soon:) you do so much to help others….just know that there are many thoughts & prayers going up for you!

  32. If you get a chance, look up Nopalea on the Internet. It’s for inflammation & for whatever reason it won’t leave my mind after I read your post. It does work on my asthma & what makes me feel even better is that it is all natural. If it seems like something that might be worth giving a shot for Daniel’s inflammation, let me know & I would be happy to cover the cost for you to try it. I know what it feels like to be ill & searching for anything that will help.

  33. Hi Melissa,
    I am very sorry to hear about your husbands medical issues. I know it must be hard for you, as such an upbeat person, to admit you also have times of sadness. I recently lost my sister to suicide, and I have so many emotions to deal with. I understand that sometimes it feels like you want to shut the world out, because no one really can understand how you feel. Its ok to let it out, it is healthy to let it out, I hear you, and I am saying a prayer for you guys. I wondered after I lost my sister, how is the world still spinning? How are the birds still singing? Why are children still laughing? Because my world had been changed, but others still live in their own happy world. I understand and if you ever need to talk my email is goodwitchsouth@yahoo.com. Have a good day, Glenda

  34. I am just now getting updated on everything that goes on the cyber world, it’s been a busy weekend around here and all the sudden I see your post. You are just human, nothing that you are doing/feeling is wrong. You have the right to have up and downs moments, you are not letting anybody down when you show your emotions. Keep your head high, somehow you are doing a great job managing everything that you do. Remember, God will never put more on you than you can bear, I totally believe this. I will put you and your family in prayers tonight and also I thank the Lord for giving you the tools to touch so many lives and that is not just about couponing. May God bless you, always.

  35. Tears are cathartic and necessary. Situations such as yours allow folks to love on one another, as we were designed to do. I have several friends who have MS, and one of them proudly sports a tshirt that says “my body attacks itself….what does YOURS do?” 🙂 You must allow your cup to be filled before you can multiply what others have given you and pour it back out to those you touch! I’m a nurse and had to give up bedside nursing for that very reason, everything took its toll and nothing was refilling the empty cup. Will be praying for you and your family!

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