Disability Training – MS Warrior Programme Week 8

This week ahead I am predicting…pain. It is the last week of the kitchen renovation and I am excited to see the end of this project. I want to get everything back on track. I want my routines back to normal (I love a good routine), I want my diet to go back to normal and I want my life back to normal. My fingers, toes, arms and legs are all crossed hoping it goes smoothly.

 

Day 50 – Monday 26th November 2018

The tiler should have been coming, SHOULD, but did not. This happened once again because of Palmers and their excellent, and by excellent, I mean awful, terrible, shocking planning.

Dom’s email was all about reviewing your goals. My views on this subject differ a little to Dom’s. I think this subject is a matter of personal opinion. By this I mean if it is right for you; then it’s right. Goals are important in life, but they should not dictate your happiness. I try to view a lot of my goals with a “do the best I can” view. Being a father is a good example of this. With my MS, I put a lot of pressure on myself. I now view it as I do the best I can every day, thus alleviating the pressure and in turn making me a better father.

My goals for this programme were simple but important. I wanted to feel stronger and to create a routine of beneficial home exercises with a healthier diet. I chose these goals because as much as I look like a super sexy, strong superhuman, unfortunately I am not. I struggle with walking (even though it does not show), I trip, stumble and don’t walk in a straight line (just ask Mark). I often bounce off people, walls, doors, pretty much anything vertical. I do my best to keep up with the pace of a young family, which is flipping exhausting. For a long time, my determination and willpower was focused all wrong. It was focused on making sure I had a great night out despite my pains and staying up late despite my fatigue. Also, eating junk food and takeaways. For most of my life I have had a shockingly poor diet. I’d feel lethargic and heavy-stomached afterwards. Despite these feelings, I kept up the same pace and same bad eating habits. Seeing this programme online and already feeling benefits from a few other lifestyles changes, I decided it was time to focus my determination on making my body better rather making it keep up with my lifestyle whilst running on empty.

It was triceps, chest and shoulders day which was tough, but like always I excel at these workouts. I am building up a storm with my thunder and lightning guns.

 

 

Day 51 – Tuesday 27th November 2018

The tiler finally turned up!!!Finally, progress was once again being made. Admittedly he only got the downstairs toilet tiled though. Someone needs to tell this guy slow and steady doesn’t always win the race!

Usually Laura does a late shift, but she swapped to an early shift because it was the torch light procession for St Barnabas Hospice. For anyone that might not know what St Barnabas hospice is, it is a charity organisation which helps provide palliative and end-of-life care to adults living with life limiting or terminal illness.  They helped my mother in law in her final few weeks and they do amazing things for so many people every day.

The torch light procession gives people a chance to dedicate a light in remembrance of someone special. Unfortunately, due to poor weather conditions it was cancelled. Instead we went out for a nice meal to our local pub restaurant, the Homestead. I worked at this restaurant back in 2003 for a total of eight hours. That’s right, eight hours, which isn’t the shortest amount of time I’ve worked somewhere, but that is another story for a different day.

Tuesday was core day. I like the phase two core workout more than the phase one workout. It is a fun workout to do. This is important for me as I have never been one of those people who have thoroughly enjoyed pumping iron or getting hot and sweaty to the have the benefit of aching for days afterwards. When the workouts are fun it makes them easier to get through. If you’re reading this (you’re probably not reading this), good job Dom.

 

 

Day 52 – Wednesday 28th November 2018

Wednesday was a nice day. Brooke-Haze and I repeated our version of carpool karaoke on the way to school. We went to the local café for lunch which was delightful, and the tiler finally finished. We have a finished floor, whoop whoop!! This must mean the end of the drama, right?!? Channelling my inner Kylie “I should be so lucky, lucky lucky lucky”. Still waiting for a call from the plumber that should have installed the radiator last week to find out when he’s coming out this week.

Dom’s email talks about something I already do. Not to use your phone when you first wake up. I have touched on this before in a previous blog post, but for those that either didn’t read it or can’t remember, here it is. Every morning I used to wake up and instantly look at Instagram. I would check for new likes, new messages, friend requests and all the unimportant things. Now I wake up and reach for my phone but not to check social media. I play my “Dave Against MS Wake Up Right” playlist (the name is a work in progress). I listen to some feel good, easy listening songs while I let my mind ease into the day. I take my tablets and supplements and give myself around 30mins of just me time. I think about the day ahead, what I need to do and what obstacles I might face. I manage my mind and expectations. After I get dressed, I make the bed. Yes, a man that makes the bed exists. I have felt a huge benefit mentally since I started this routine. I know this is not possible for some people to do in the mornings. I do recommend giving yourself you time, whether that is in the morning, afternoon or when everyone is in bed, it doesn’t matter. Find that time and I am sure you will feel better for it.

We went and got our Christmas tree in the evening. We have a real tree every year and it is an important decision choosing the right one. I am somewhat indecisive with simple decisions so picking the tree that will represent Christmas for over a month is an ordeal. I always think “what if that tree at the back is the best one?” I throw trees left right and centre to find the right one.

Biceps, back and shoulders worked today. I tell you that thunder and lightning storm is really brewing now.

 

 

Day 53 – Thursday 29th November 2018

This was the worst day I’ve had in a long time. I never got my phone call from the plumber that was promised to me. Instead I woke up to a text message from him saying he is coming next Wednesday. I was so mad when I received this message. I tried ringing him to discuss this but got no answer. I tried ringing the kitchen fitter who employed him to do the job; no answer. I tried ringing Sarah, the lady who sold us this dream of a stress-free job; no answer there either. I was seething, almost foaming at the mouth with anger. Finally, Sarah rang me back and said all the right things, but I have zero faith in any of them anymore. Richard, the fitter rang back and was surprised himself that his plumber had said next week. I am on my last tether from dealing with every problem Palmers have caused. Dealing with being a father with a chronic illness is already difficult, add in all the problems I have had to sort and it’s getting too much.

I felt broken. Nobody was taking responsibility; it was just really terrible after sales service. Andy from Palmers got a different plumber to come out, but no brackets or valves in sight to fit it; fantastic! I got a call later from the fitter who told me where the brackets were, what an idiot. Plumber now scheduled for Friday. I just want to punch this Andy guy in his face until my arm gets tired. The when it’s tired, hit him some more.

Thankfully it was balance day. I needed it as it is relaxing, therapeutic and low stress on the body. Brooke-Haze also had her school disco, she looked so beautiful all dressed up. Brooke-Haze loves getting dressed up and having her hair done; she is a real girly girl. I had the pleasure of picking her up. On the walk from the car to the school I was struggling to walk. The cold was causing such bad spasms I almost fell over jogging across a road. It was the final low point of a pretty crappy day.

 

 

Day 54 – Friday 30th November 2018

I did not sleep well last night. All the stress from yesterday swirling around in my complex melon, I had no chance of my over active mind calming. Almost falling over yesterday was still playing on my mind. I tried to get hold over my MS team but I did not realise they don’t work Fridays. I do have my MS co-ordinator Michelle’s number. She is so good, she has replied to me when she has been on the way back from Mexico, in hospital herself and today when she was on her way to London. She still replies even when she is busy living her own life, that is what makes Michelle stand out from many other medical professionals. Thank you, Michelle.

Laura was off and our plan was to go Christmas shopping. I dragged my broken carcass out of bed and off to Lincoln’s city centre. The cold was gripping my right leg and causing the muscles in my leg to spasm which made walking difficult. I had major pimp limp going on and I was angry inside. I played it off, making jokes like I usually do but inside I felt insecure, I did not like it. Then something instantly cheered me up, Batman and a Minion. A few people were dressed up singing Christmas carols to raise money for the homeless. I went over, donated a few quid and had a photo with them both. A good way to start a Friday.

I have one rule for Christmas shopping (goes for any kind of shopping really, especially food shopping), that rule is “have a plan.” Where are we going? What are we getting? Etc. My badgering paid off as it was not the worst trip to town I have been on, except for the Card Factory. Packed in close to strangers cheeky groping my buns of steel, all for Christmas cards the third of the price of Clintons. Clintons, I blame you.  We had a very posh lunch out at a place called The Cozy Club. If you follow my IG story (if not, why not?? They’re hilarious) you would have seen the little pots and wrapped sugar cubes. I did feel out of place with my hoodie and bobble hat. All their waiters/ waitresses were fashionable, something I am not. But it was nice and also reasonably priced, I would definitely go again. After shopping, we went home to hide certain gifts. Time for school pick up, then Ember pick up, then for the real craziness to start.

It was leg day, but there was no chance I was going to do this, so I did my stretches again. All my leg muscles were tight and after a day of spasms I thought it wasn’t smart to work them even more. The plumber did not come again, surprising I know. But we did decorate the tree which is always a special thing to do with the girls.

 

 

Day 55 – Saturday 1st December 2018

Ballet day, we just made it, sort of. My body was in desperate need of some r&r. I also wanted to have a nice fun day with the girls. Nothing recharges my soul more than their laughter.
No exercises from Dom. My legs were suffering badly due to the spasms and the crazy amount of walking yesterday. My right leg was tremoring walking up and down the stairs. I did not feel steady or balanced. My right arm felt alien from my body. This is all caused due to the scarring in my spine. I feel I deal very well overall but days like this frustrate me because it is like I am being punished for wanting to be an active member of the family and do usual parental activities.

 

 

Day 56 – Sunday 2nd December 2018

It was a slow start and I don’t think it picked up. Brooke-Haze went and got Ember up and they played together in Brooke-Haze’s room (you would have seen if you follow my IG story, seriously why aren’t you following it?). If you do follow it you would have seen nothing short of fun, laughter and wholesome family time. It was good, but also painful, exhausting and difficult. I know social media is mainly people’s highlight reels and I try not to fall into this category (especially in my blog). Today it wasn’t so much my highlight reel as it was ensuring my girls are not affected by this awful, life sucking, soul stealing illness.

Craig, Kat and Gary (brother-in law, sister-in-law and nephew), came over for tea/dinner. The girls were their usually loony selves, especially with their little cousin here. Craig kindly helped me throw the old dishwasher in the skip since the builders are useless. I joke and put up a front when not just them, anyone comes to visit. We all do it. My leg was bad and once again I played it down and joked about struggling with the dishwasher. It is so frustrating inside when you feel you should be able to do something. I look like I should be able to, but I can’t. Kat said some nice things about my blog which like any compliment I receive (which isn’t very often) I struggle with a sensible reply. Confrontation I am ready for, compliments, I’m shy. Thank you for taking the time to read about me and my life.

 

 

Conclusion

It’s been another difficult week. I realise every week has its own set of problems; I just feel I have reached my limit lately in many ways. I sometimes feel I am juggling so many balls (not testicles cheeky) that I worry what happens if one drops? Still, with these feelings and fears I always have that voice inside my head asking, “you can’t take one more step?” or “you can’t figure this out?” To which I answer “yes I can” I am grateful to have that voice pushing me to go one more round. I would like to thank everyone one who takes time to read my blog. I sincerely am very grateful. It doesn’t matter if one person or a hundred people read this. The more I write, the more honest I am, the more honest I am, and the more therapeutic it is. I am working a couple of days next week with my brother (lucky Mark). Hopefully this next week will be better, my foot and legs will heal, the sun will shine and there will be peace around the world. You never know, the sun might shine.

Please share this post with your friends

Leave a Reply

Your email address will not be published. Required fields are marked *