MS the first week after diagnosis

So I went to a neurologist last Tuesday morning and was diagnosed with multiple sclerosis. I think within time I will forget how this week felt so here it is.

Tuesday was awful I cried a lot and I remember thinking that it started raining just after I got into the car and it felt like everyone was crying with me. I got myself home, I was alone as I had known I was going to be upset and didn’t want anyone else there. I had people I had to tell, I told my boyfriend, my mum and my brother. Then it felt like I hit a wall I didn’t want to tell anyone else. A friend I’ve been friends with for years asked how my appointment was so I told her too.

I had been given the full day off work and I needed it. My world was turned upside down and I didn’t know where to start. I’m waiting for a referral to a local MS clinic. But what do I do in the mean time? Just sit and wait? I thought about changing my diet, I thought about exercising, giving up work, going part time, emigrating to where had the best treatment. I must have had every thought, along with why me.

I pulled myself together and spent most of the day and late evening looking into support groups in my local area and online. I fell asleep early by about 9pm.

Wednesday – I woke up feeling ready to fight this. I would do whatever I needed to do to get through it. I headed off for a day at work. By late morning a colleague asked how things were and I told her. Apart from that I didn’t say to anyone else. I had agreed I would speak to my manager about the appointment around lunch time, so I went along and explained what was going on and that I really didn’t know what was going to help me just now.

By the end of the working day I was shattered. I just wanted to sleep but I couldn’t I still had loads to do. And everything seemed to go wrong. When I got home I didn’t stop, tidying, dinner etc. Just getting things organised for the children that night. Then it hit me how was I going to do this healthy eating and exercise when I couldn’t get a minute to myself until after they went to bed.

I got everything under control and was happy with myself, prepared something for dinner then my youngest asked to go to the toilet. I went to help him and when I came back the dog had ate some of our dinner! This was it, this was my breaking point, I was giving up! I felt like I was crumbling, I couldn’t cope with this latest blow I’d been given. But with children I couldn’t stop, I had to keep going. So I ordered food in and waited for it to arrive. The guilt I felt was horrible I was meant to be eating healthier! I was meant to be going gluten, wheat, dairy and sugar free. And I had just ordered pizza and fried food to go with it!

I spoke to my boyfriend honestly that night about how crap I felt about everything. Then went to bed and I lay staring not able to sleep.

Thursday – working from home, struggled most of the day to get things done. Either distracted or feeling exhausted. Really struggling to know if I should be at work or not just now. Didn’t really get time to look up much about MS, which might be a good thing. Today I’ve felt like my hands are stiff and generally ache not sure if this is in my mind though.

Friday – I didn’t sleep well and I had been up with the boys through the night. I felt exhausted. I had arranged to see my manager around lunch time but by 9.30 I knew I wasn’t coping with being back at work. I went along to see my manager and we chatted. I was told to head home and not worry about what was going on at work. I went back to work and a girl I’m friends with asked how things were going. I couldn’t help it I told her through tears what was going on. I left work about 1 and went straight to me GP, I was told there were no appointments until the next Friday. I had suspected this and instead of passing on a long message for the receptionist I had written it down. I passed it to her and asked her to read it and let me know if it made sense. She looked at it and replied “oh I’ll find you an appointment”. I ended up with a phone appointment, the GP was great and was surprised that I had been back to work while I still had optic neuritis. But said she completely agreed I shouldn’t be working just now. I just can’t cope with that pressure too.

Saturday and Sunday passed okay “it” was spoken about and my boys saw there Dad for the first time in a few weeks. Just wish that hadn’t added extra pressure with my ex talking in my eldest’s ear.

Monday – I’m off work again, but there are reports that I still need to submit. So I sit down to do them and panic fills me, I feel the pressure that I need to get them done. And I suddenly feel like I can’t cope. But I get the work done and I’m ready to continue.

I need to to digest everything that has changed recently, with a diagnosis of MS just being the latest thing. I had requested information from the MS society and it arrived today. I’ve got to admit I feel like I’m eyeing up this parcel suspiciously and putting off opening it. As if opening it means it’s real and it’s going to make everything worse. I ordered it. So I know exactly what it is and it’s meant to help me. (I did open it later but I haven’t actually read it)

I decided to walk the dog myself today. I had no idea I had so much anxiety building up in me. I used to run with the dog and on a treadmill. I would do between 4-5k and I only stopped in the winter because it was too cold and I wasn’t enjoying it. But now I’m walking the dog and the weather is glorious. But I’m terrified that my MS is going to do something and I’m out here alone. Everytime I scuff my foot I think about how my symptoms have been there. I’ve just not seen them.

I come back from my walk and sit down, I realise that again my thighs are tingling, this happens everytime I walk any distance. It’s just annoying and nothing more. I ask Mr google if this is a MS sign. Of course it is.

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Las Vegas – day 7 and traveling home

So it was our last day already. The time went so fast. While having breakfast we were talking about what we were going to do for the day. My new man wanted to go back to a store which had a few comics. So after a brief discussion we decided that it would be better to go to a local comic book store instead. So off we went in search of one.

We found a good one… or at least I think it was. Comics or graphic novels aren’t really my thing. But u got a few good things for the kids (and my big kid was happy)

When we were heading back to the strip we stopped at the Ice Bar, what an experience. Everything is made of ice including the glasses. It was the afternoon and we were told it was a quiet time in Vegas so we had the place to ourselves. It was great as it gave us loads of time to look round the place.

Now it was feeling that we were chasing the clock to do as much as we could before heading home. We went to New York New York and went on the rollercoaster before going to a buffet which got great recommendation as all alcohol was also included.

Then out was time to head home. I have to say it’s one of the best flights I’ve had as I slept through most of it.

Las Vegas – day 6

I had heard that Prime Burger made the best alcoholic milkshakes, so of course we had to try them. Just as we were finishing our meal my new man started to look really bad. He came down with something pretty quick and looked really ill. We went back to the hotel and I let him try and get some sleep while I hit the shops again. I didn’t get to see half the shopping mall as I had to get back because we had booked tickets to see Terry Factor.

I got back to the hotel and we got ready to go out. I have to say this was the show I was most excited to see and I think it was obvious. We were not disappointed, this was a great show and worth every cent!

My new man had seen White Castle burger place in films and was desperate to try it. So we went all dressed up, and what a horrible place. I’ve never eaten anything so disgusting before.

We had tried to go to Dueling Pianos the other night and it was closed so we decided to try again tonight as it was close to our hotel.

It felt like this was one of our best nights, relaxed and do much fun.

Vegas day 5 – Sunday

I’m hoping to talk to the kids this morning. I can’t believe that after last night I’m wide awake at 8.30! We both woke about 7 and he went out to buy some water for me and then we both fell back asleep. I would like to sleep longer but I can’t which seems to be the moral of this holiday.

We took it slow today and wondered around more of the hotels after I spoke to the boys. It was odd the kids being kids I ended up talking more to my ex than them.

We had lots planned in a short space of time tonight and we cut it tight. I wanted to go to the Voodoo night club for what I heard was amazing views. I got a great package deal which included a go on the zip line. So off we went to experience the Voodoo lounge.

I have to say that the whole Voodoo experience was the most unorganised place that we went to. We were trying to get on the zip line (which had a long wait) and get dinner before we went to see Penn and Teller at 9pm. It was very tight and while we were unsure of the best order to do things I didn’t realise my new man was getting in a very bad mood because he was getting so hungry.

But it all worked out in the end and we got everything done. Including eating before the show.

Vegas day 4 – Saturday

Today was shopping day. Shop shop shop! There are two main outlet malls just off the strip and we did both of them today. Spent a small fortune but it was worth it. The boys will have a ball when we get back and see what we got them.

Our plan was always to shop, grab something to eat and then head to Fremont street. What an amazing place! Live rock music out on the street and no cover charge to get in. No idea how they measure the drinks though as the were very strong.

We went to get into a club after and never got up the stairs when someone who worked there apparently shook their head no at us. Wasn’t too disappointed. In my opinion drinking and stairs shouldn’t be mixed.

But what happened next I might pay for today. My new guy appeared to be struggling with the lack of measuring the drinks. So I was of course a caring and supportive girlfriend… I took photos of him sleeping and posted on his social media with a tag line about how we got thrown out a casino for him sleeping.

Vegas day 3 – Friday

We had loads planned again today, but I have to say I think it’s the best way. I had booked to go to Battlefield Las Vegas – a local gun range. Not being from America I think our instructor was very surprised to find that neither of us had shot a gun before. Was a great experience.

When we had been at the Stratosphere hotel a few days ago we knew we wanted to go back to go on the extreme rides. So we went back and went on the 3 extreme rides. (Which in my opinion were pretty tame, but maybe I’m a bit crazy).

I had booked us a steak dinner at Circus Circus with wine and before that we had more alcoholic ice drinks. (I think I may have had enough of them for a life time)

I think this is the only hotel that is designed for kids. It has a circus in the middle and an arcade round it. And it’s the only place I seen loads of kids in one place.

Vegas day 2 – Thursday

We had loads more planned for today although we were still up very early with being in bed early the night before. We had a quick shot on the machines before heading out for the day, and I think it might have still been before 9am. But we had already been up for hours!

We walked most of the length of the strip and got to the stratosphere hotel. We assumed we would get free Wi-Fi so we could book a private hire car to take us to the airport. We couldn’t get Wi-Fi and ended up in a regular cab/taxi. He had no idea where he was going and although I had googled the distances before we left he thought it was going to take over 30min to get there.

Turned out that it took less than 20mins so we made it on time to get our helicopter tour of Red Rock Canyon. The views were amazing!

After the helicopter tour we headed back to the strip and went to Pampas bar and Grille, this place was amazing. It’s like a buffet of meat which is served to your table.

We decided that we were going to go a short walk. But we were too tired and hot to walk too far. So we went to Fat Burger for some alcoholic slush puppy drinks. They were very sweet and didn’t taste much of alcohol. But we could feel the effects of the alcohol.

We passed some time before we went to the premiere showing of Batman vs Superman. And I’m ashamed to say the yet lag hit again and I fell asleep and missed some of the film.

Tonight we realised just how great the views were from the hotel room.