How are you and what are you doing with this pandemic stay at home time?

[REG53]

I have been having anxiety a lot lately but I am doing well. I am still making masks for family now and the time fly's by.

It is hard but I keep saying "there are better days a coming."

What I have learned from this is, I will not take things for granted any more.

I hope everyone stays safe and there are better days a coming.

[pennstater]

Seasha - Sorry to hear you have had some days out of sorts. Even though it may not seem it, getting away from routines can be stressful. I know I am missing the face to face time with people and hugging! I had my infusion yesterday and would have normally hugged the one woman I haven't seen in a while, but couldn't.

I also had a meltdown the other day. Like you said, something that normally wouldn't bother me, and my poor husband wasn't sure what it was all about. Thankfully, he recognized I was just in a moment

We are only human. As hard as we may fight to stay upbeat and optimistic, once in a while, we have to let ourselves crack.

Hope you are feeling better.

[loopey]

Italy will slowly ease up the restrictions starting May 4. I just hope that people will still remain concerned enough to follow the rules though I am sure everyone is anxious to have a little more time outside. It has been beautiful here and I am sad that I missed most of spring. I have done OK during the last two months of confinement. One small restaurant started pizza delivery which helped break of the monotony of our diets.

I don't think I have been especially crabby but I have felt down some days. I got a cough and almost panicked but it got better after a couple of days. I will try to go to my son's small village after travel is allowed. He lives an hour away by train. I think we will take a long walk together even though we still won't be able to have our cappuccino together first. Bars and cafe's won't open until June.

Stay safe everyone!

[palmtree]

Hello my friends,

Just checking back to see how you're all doing as we weather out this unrelenting storm of covid19.
I hope you are still playing as safe as you possibly can.

I'm wondering how you're all doing mentally? It has been a challenge for me to keep my spirits up at times. It's day 49 for me and it's getting real old. I guess I need to remind myself of all I feel grateful for (and I do), but some days are harder than others.

Today, I dropped and broke my favorite cup and also a special bowl I got from my mom after she passed away 2 1/2 years ago. Normally I'd let it slide as they are just "things", but I burst into tears. I have also been really snippy at times with my wonderful husband over petty things and that is not like me. I'm a pretty laid back person.

Is it just me? Are other feeling somewhat depressed at times? I try to stay busy, get outside most days, limit my news intake, talk with kids and grandkids which help, but other times I just want to stay in my pj's until the afternoon and stare at nothing -

I caught a snippet of Katy Perry saying she feels a weird sense of uncertainty during this time. And I thought that those of us living with MS live with that almost every day. She says that practicing patience is what is important to her. A good reminder for me!

I think of those of you who are alone, those of you with young children at home, those of you still working and I appreciate your efforts and circumstances. And for those of you who have lost dear one, you have my sympathy.

Please stay safe - especially those of you in states that have eased up restrictions!

I generally enjoy quiet time inside. But the danger that I anticipated and has sort of materialized is that those of us who are in shelter in place together find that the subtle differences in our personalities are harder to navigate around when there is no escape. So far I have been able to keep all my relationships intact even when some days it feels uncomfortable.

My son was “serving” his shelter in place with his girlfriend at her parents house. He finally went back to his apartment. I don’t meddle in details but I think they got kind of sick of each other.

It’s spite of all of these difficulties. I am still a proponent of remaining in our homes as long as possible. These groups that are protesting don’t realize what a dangerous foe this virus is.

[palmtree]

Oh Palmtree I am feeling the stress for you from your wedding time! That is so much at once that i think i would be curled in a ball unable to move. I give credit for making it through! The definition of strength is being able to pull through so much happening at once. Wow!

I think our plan is to cancel the wedding but not tell the venue and go from there. I already messaged another venue just in case the current one does not want to be friendly. My fiance and I have gone through a lot and our wedding plans have been turned around many times. We were engaged in 2014. In 2015 my grandfather passed (who was my father figure). My world crashed around me. I then decided to have a destination wedding as that is what my fiance wanted and i wouldn't do because my grandfather couldn't fly. Two months after his funeral we went to a travel agent to start planning. A month later i was informed if i wanted kids i needed to start as i was developing cancerous cells in my lady parts. So we postponed wedding as i wanted a child badly. After having our daughter we had some difficulty adjusting to parenthood while balancing our relationship and it was a little rocky. When things settled, i was diagnosed with MS. Seeing how my fiance reacted to my diagnosis made me want to marry him the next day. That is when we started this wedding planning. A month ago i had an ectopic pregnancy (this was one in a million odds that my OB told me to play the lotto) and had to have emergency surgery to remove both my tubes. I had surgery the week before NY shut down. I was looking forward to something positive in our lives as it's been hardship after hardship (emotionally). Now to not be able to marry my fiance after 6 years of planning and finally ready, just has been another emotional toll.

However, does not mean my relationship is over. does not mean the wedding won't happen. does not mean the world is over. I'm allowing myself to be upset and then move on and planning my second wedding to my first husband

Thank you so much for understanding what I was going through. I didn’t have a lot of support at the time so hearing your words 40 years later felt really good.

You and your fiancé will have a beautiful wedding when you can. A wedding is only one day. The best wedding is the one that lasts and lasts.

On the bright side this will give you more time to brainstorm some creative wedding. I imagine a small ceremony where you say your vows on a Hawaiian cliff (not too high) over the ocean. As soon as the flowers are thrown the husband and wife jump into the water together. That is sort of what marriage is anyway. (Warning! Do not attempt if you do not know how to swim). I don’t know. A sense of humor can get us through a lot.

I sure hope your venue cancels and you get your money back.

[Seasha]

Hello my friends,

Just checking back to see how you're all doing as we weather out this unrelenting storm of covid19.
I hope you are still playing as safe as you possibly can.

I'm wondering how you're all doing mentally? It has been a challenge for me to keep my spirits up at times. It's day 49 for me and it's getting real old. I guess I need to remind myself of all I feel grateful for (and I do), but some days are harder than others.

Today, I dropped and broke my favorite cup and also a special bowl I got from my mom after she passed away 2 1/2 years ago. Normally I'd let it slide as they are just "things", but I burst into tears. I have also been really snippy at times with my wonderful husband over petty things and that is not like me. I'm a pretty laid back person.

Is it just me? Are other feeling somewhat depressed at times? I try to stay busy, get outside most days, limit my news intake, talk with kids and grandkids which help, but other times I just want to stay in my pj's until the afternoon and stare at nothing -

I caught a snippet of Katy Perry saying she feels a weird sense of uncertainty during this time. And I thought that those of us living with MS live with that almost every day. She says that practicing patience is what is important to her. A good reminder for me!

I think of those of you who are alone, those of you with young children at home, those of you still working and I appreciate your efforts and circumstances. And for those of you who have lost dear one, you have my sympathy.

Please stay safe - especially those of you in states that have eased up restrictions!

[Jennaly16]

Oh Palmtree I am feeling the stress for you from your wedding time! That is so much at once that i think i would be curled in a ball unable to move. I give credit for making it through! The definition of strength is being able to pull through so much happening at once. Wow!

I think our plan is to cancel the wedding but not tell the venue and go from there. I already messaged another venue just in case the current one does not want to be friendly. My fiance and I have gone through a lot and our wedding plans have been turned around many times. We were engaged in 2014. In 2015 my grandfather passed (who was my father figure). My world crashed around me. I then decided to have a destination wedding as that is what my fiance wanted and i wouldn't do because my grandfather couldn't fly. Two months after his funeral we went to a travel agent to start planning. A month later i was informed if i wanted kids i needed to start as i was developing cancerous cells in my lady parts. So we postponed wedding as i wanted a child badly. After having our daughter we had some difficulty adjusting to parenthood while balancing our relationship and it was a little rocky. When things settled, i was diagnosed with MS. Seeing how my fiance reacted to my diagnosis made me want to marry him the next day. That is when we started this wedding planning. A month ago i had an ectopic pregnancy (this was one in a million odds that my OB told me to play the lotto) and had to have emergency surgery to remove both my tubes. I had surgery the week before NY shut down. I was looking forward to something positive in our lives as it's been hardship after hardship (emotionally). Now to not be able to marry my fiance after 6 years of planning and finally ready, just has been another emotional toll.

However, does not mean my relationship is over. does not mean the wedding won't happen. does not mean the world is over. I'm allowing myself to be upset and then move on and planning my second wedding to my first husband

[palmtree]

I have been so stressed and depressed with all of this. I am an essential worker so i continue to go into the office. I have my own so we are able to social distance. It's nice to have some "normalcy" during all this.

My stress is from wedding planning. I'm supposed to get married June 20th and i need to mail out invites next week. The venue will not let us reschedule as they said if they are open and able to have a wedding on June 20th, we lose our deposit since we could have had it. Our Governor just extended staying home until May 15th (live in NY). I don't know what to do and go between risking having the wedding or saying forget it and eat the deposit. My dress is locked up in a bridal shop and guys can't get measured for suits. I've waited 6 years to walk down the aisle and feel like it's slipping away. My bridal shower and bachloerette have already been rescheduled until later this year but really wanted to get married. I know others have it much worse and sounds like such a first world problem however stress is causing my fatigue and i have no energy to do anything. I get home from work and want to just sit on the couch. Even getting dressed has gone from doing my hair, looking professional to jeans, sweatshirt and hair in messy bun.

Outside of stressing, my fiance does all the public errands (store, etc). He is also essential employee. My three year old goes to sitter's house (alone with no other kids) and then comes home. She doesn't understand why she isn't seeing any of our family. She is used to seeing both her grandma's on the weekend and she hasn't seen them in over a month.

The positive part has been using zoom and houseparty to connect with family. At least we can see each other's faces!

Jennaly,

This may be a first world problem but I think a woman from any part of the world can relate to the stress of having uncertainty about such an important day of her life. And, covid-19 does not care what part of the world you live in. It can ravage your village all the same. In a way, this pandemic has made us all from the same world.

I don’t know how much the deposit is for the wedding venue but, since you are working, you deserve to have this stress taken off of you. I would postpone the wedding without telling the owners of the wedding place. Then, if they cancel it on you, you get your deposit back. If they still haven’t cancelled it the day before (or whatever the cancellation date in the contract stipulates) then tell them you are canceling it. They are playing chicken with you about the deposit but two can play that game. It’s a 50/50 gamble but it’s what I would do.

This brings back memories of the summer of my wedding. It was 1983. I had met the man of my dreams. We were planning the wedding. In those days it was still customary for the family of the bride to pay for the wedding expenses. This also means that the mother of the bride controls every detail. I was working at a job that I hated, studying for the architectural license exam and keeping a fiancé happy in June. The wedding was planned for the end of July. My M-F job was to draw plans of tables and chairs for hotel interiors. Underneath the plan of the hotel lobby was a floor plan of my parents backyard, the wedding venue. Whenever I got a chance I would untape the plan of the hotel lobby and work on the layout for the wedding reception(table and chairs, dance floor, band...)

The stress of it all, especially the architect license exam, was too much for me so I went to see my therapist. She was ruled that I should let my mother plan the wedding so I let her worry about what kind of dinner rolls there should be. I credit my therapist for her help with the architectural license exam. I told her the thing that was worrying me the most was designing the building to comply with handicapped design requirements. She told me, “just imagine you are a handicapped person trying to park and get around the building”. As a result, that Saturday I designed a building totally around handicapped access. I passed.

When I think back about much the handicapped design seemed like a burden when I was 29 now, whenever I approach any building the first thing I consider is where will I park? How can I get up the stairs to the entrance? How can I get to the elevator and how to reach the rest of the building without having to strain my legs walking?

Architectural exam out of the way. Whew! The following Saturday, a week after I sat for the exam, I got a strange phone call. It was from a woman who I did not know. She had some news. My therapist had died of cancer. So the following week we went to the funeral and I helped bury the woman who had helped me for five years. I thought that everything would be ok and that it wouldn’t be that bad but it was that bad.

The month of July was spent picking out the wedding dress, the bridesmaids dresses(this was composed of handing my friends, who had offered to be in the wedding, a bag with sewing material, a pattern, thread etc. and telling them to make their dresses).

My diabetic sister, who was to be maid of honor, wanted to design the dresses so I let her because she was such a talented artist. It was hard coming up with six bridesmaids but I had to. My fiancé had six brothers. I asked my two best friends, my fiancé’s only sister and a girl from work. On the way to the fitting appointment the girl, another woman architect, to,d me she was gay. This was 1983. I almost got in a car crash.

July 29 finally came. I wanted to sleep in so I would be beautiful at my wedding but woke up st the crack of dawn and couldn’t get back to sleep. I drove over to my parents house where they wer setting up the dance floor and the tables. My sister was still busy sewing he dress for that night. My mom was not home.

A few hours later she came back. She had come back from the hospital ER because my father had just had a TIA. I felt so bad. How could I do something so terrible as get married? He couldn’t take it.

It was time for the ceremony. I threw my dress on and did what I could with my hair. My hairdresser had just cut my hair and got the bangs too short. It was hopelessly ruined. Lesson: never get your hair cut before your wedding.

We were waiting at the door to come in with the wedding procession. I could peak inside. The church was packed. Music started and my six brothers in law lined up at the alter. When the attendees saw these six brothers from Indonesia line up at the alter the whole church let out a collective sigh. It was the moment everyone remembers most about that wedding.

The bridesmaids marched in one by one. When my sister, the maid of honor, started down the aisle she collapsed. My mother quickly whisked her over to where they were sitting. She was never in the ceremony.

We did all the things people do at their weddings. Went to the reception and there were so many people that my husband and I were chained to where we were sitting. We never saw the cake. Story was that sister number two had baked it, it slid to the side and the dog ate it.

After the honeymoon a low budget affair, husband and wife went back to set up housekeeping. My sister passed out again when she was helping him move out of his apartment into mine. He is a very spiritual man. He told me that day he had a bad feeling something was going to happen.

A week later, on a Saturday I got a phone call from mother. She said she couldn’t get ahold of my sister and asked me to go check on her. I drove down to the beach where she lived. It was a beautiful day. Climbed up the stairs to her room. The door was locked. No one was home. Feeling the ocean breeze I walked down to the shoreline. Looked along the water line towards Santa Monica Pier where my sister walked every day. Stopped at the Sidewalk Cafe where she frequented. Asked if anyone had seen her. No. They had not. I called my mom, told her I thought everything was ok and that my sister was out walking along the beach.

Mother persisted. The following day, Sunday, mother drove down to the beach. Tried to get my sister to answer but there was silence. Someone helped her break into the house. That is when I got the phone call. “Your sister is gone”.

So, to me, getting married is something I could have skipped. It meant that my therapist died of cancer, my father had a TIA and my nearly twin sister died of diabetes.

Sorry to ramble on like this. Sometimes we have to remember. That day I told myself I had experienced everything bad that there was. The only thing worse was to get MS. That was saved for later.

[brenmatt97]

Thank you Seasha for all the information.
I'm definitely going to look over each of them.
I'm sure I'll be posting again soon. I've got so many questions about my husband's current 'state' that I honestly do not know where else to go for opinions, thoughts, recommendations, etc.. I just have to gather my thoughts on it.

Thanks again!
Stay safe & healthy always!
Brenda

[Seasha]

Thank you Brenda for posting here in support for your husband and you yourself too.

I think there was a chat time for caregivers but that was some time ago. I'm sure that if you addressed that in a regular chat session, someone would be there to listen - the same as here in the message boards.

We do have a forum here called the Family room https://www.msworld.org/forum/forumd...he-Family-Room where you can post your concerns.

As far as a specific site/forum for Caregivers there is this- https://multiplesclerosis.net/topic/...s-a-caregiver/

You might find this to be of help too - https://www.healthline.com/health/mu...erosis/support

I'm sorry you have lost his caregiver during this time. I'm sure it has been a challenge, as it's been a challenging time for many of us. And I get it about pulling your hair out! My husband and I have had our share of arguments and disagreements. One time we didn't even speak to each other for over 24 hours.

I hope you can find time for yourself and you both stay healthy and safe

[brenmatt97]

Hello everyone.
I'm actually a caregiver for my husband DX in 2009 and have had to work from home since all of this started. He usually has a caretaker that comes in while I am at work but since COVID-19 it has been just me. Luckily he has been healthy through all of this but I'm sure we're both ready to pull each other's hair out.

I understand this is mainly for people DX with MS but was wondering if anyone knew if there was a caregiver's site/forum/chat available similar to this? I've scanned through the forum topics and have gone into the chat room but didn't see anything on the calendar. I could have sworn there was a night in a chat room that was dedicated to caregivers.

Thank you and hope everyone stays safe & healthy!

Brenda

[Seasha]

Then, I realized we are going to be making our own masks. After researching it, I got out my grandmother’s antique Featherweight sewing machine and started inventing ways to do it correctly. It’s been fun having a project like that now and feeling like I am helping in a small way to stop the spread of a global threat. I have made 6 of them now. Family and friends all want one.

So glad you and others are doing this! I should get out my sewing machine and make some too. DH and I went grocery shopping today (he shopped and I stayed in the car) and was amazed at all the decorative fabrics that everyone was using for masks.

It’s almost time for spring planting. Since everyone wants to garden now there is a major shortage of seeds.

Tell me about it! I've gardened for years and have never seen such shortage of veggie starts as well.
Sometime said the increase of gardens is like the Victory gardens of WWII. So, yes, like a war effort.

This was the year I was going to cut way back and also have my gardening daughter who lives 30 miles away help me. Well,that's not gonna happen, so I'm back at it - slowly and with difficulty.
Wish me luck!

[palmtree]

Hi Seasha,

Thank you for posting this. We would all like to know how everyone is managing and God willing we are all safe.

I started out with the realization that I was going to have to get real creative. The first challenge was trying to get basic necessities. For me that is gloves, paper products and disinfectants. This are things I use all the time. I was making phone calls and my helper was scouring all the stores every day. The goldmine was finding 99.8% isopropyl alcohol at Ace Hardware. It comes in a gallon can and I dilute it with distilled water.

Then, I realized we are going to be making our own masks. After researching it, I got out my grandmother’s antique Featherweight sewing machine and started inventing ways to do it correctly. It’s been fun having a project like that now and feeling like I am helping in a small way to stop the spread of a global threat. I have made 6 of them now. Family and friends all want one.

It’s almost time for spring planting. Since everyone wants to garden now there is a major shortage of seeds.

All and all I enjoy the challenge of times like this. We are all facing the same fears and the same goals. It’s a war effort.

[Jennaly16]

Thank you everyone for your thoughts. I'm lucky to not be down to the wire exactly yet but need to make a decision soon! All of our other vendors are very happy to reschedule, it's the venue being not so nice however i get it, they are a small business. It's just been a rough few months and this was something to look forward to.

In the end can't complain too much. It's not the end of a relationship, just change in plans

Everyone stay safe! I love hearing how other people in other states/countries are doing since it always sounds negative here!

[DPL2014]

Thanks REG and Seasha! Just really anxious for things to get back to normal. Hoping they come up with a medication to treat and a vaccine to prevent Covid soon.