Dave’s Living With MS Blog – March 2019

March is officially known as MS AWARENESS month! The time of year where the MS’ers come together to try to educate the world of everything to do with Multiple Sclerosis. People share their experiences with symptoms, diagnosis, treatments and what it is really like living life with a chronic illness; all in the hopes it helps other people affected by this cruel and unforgiving illness.  Although many of us share our daily lives with one another on various social media platforms, this month is our opportunity to pull back the curtain and show how difficult the bare-naked struggle of life with MS is. I believe this to be the way to truly educate those that don’t understand. Also, by not sugar coating it you might reach a person who might be feeling isolated and really needs to hear that someone else feels like they do and they are not alone. I believe it is the strongest among us who share their vulnerabilities. These people have the potential to give hope to the hopeless and inject life into the lifeless. If the only thing you did with your life was ease the pain of another and showed them that they shouldn’t give up on life or themselves, then you will have a lived a very important, remarkable life.

Personally, I found March to have been a difficult one. It has been filled with ecstatic celebrations, moments of melancholy and everything in between. If that doesn’t make you want to keep reading, I don’t know what will.

Brooke’s Birthday

Brooke-Haze turned 6 years old this month! Brookes birthday was on a Saturday and what a weekend we made it for that little princess. On the morning of her birthday she woke up early, but not as early as me and Laura had predicted. She climbed into our bed for some nice morning cuddles before we woke Ember up (because Ember is a pain to Brooke-Haze when she’s tired). After the cuddles we went downstairs to give Brooke-Haze her presents. She opened the door and saw her pile of presents and birthday cards; her face filled up with so much excitement and wonder that I thought her head might explode. I had tears of joy in my eyes watching Brooke-Haze read out the card she had received from us. Hearing those kind words (written by me) read out by Brooke and knowing she understands what she is reading was a beautiful moment. Once all the cards were opened and read, it was present time! Brooke-Haze loves unwrapping gifts (what child doesn’t) but she is happy with whatever is inside – she makes receiving socks the greatest gift of all – which they obviously are Laura.

In the afternoon we had family round. An unfortunate tradition seemed to be starting on Brooke’s birthday; this tradition being she is sick/ vomits. A tradition her Uncle Mark knows all too well. Last year Brooke was at school on her birthday and got up super early. After a full-on day at school on little sleep she came home to have tea and cake, she then sat on Uncle Mark because she wanted a cuddle (which we have a nice photo of somewhere) then from out of nowhere Brooke-Haze erupts and is sick all over Uncle Mark. I know what you guys are thinking, “poor Mark”, but I was sat next to him and I witnessed this catastrophe so close that I was in the splash zone and I got some on my leg. Brooke was sick the year before that in the car! This year though we planned for it, we monitored her activities and intake of food closely. I felt like I was Nate Dogg the way I regulated the day (for classic rap fans) and Brooke made it through the day without being sick.

On the Sunday was Brooke-Haze’s birthday party. All her school friends were invited. We hired a hall and two princesses to come and run the party, which meant me and Laura had to practically do nothing. The princesses were Aurora and Belle, and watching Brooke-Haze’s face light up as they were walking in was worth every penny. The party was lovely, the kids had lots of fun and most importantly Brooke still wasn’t sick.

 My daughters’ birthdays are always a bittersweet day; one half being proudly happy of these gorgeous girls growing up whilst the other half being a little sad. I’m sure many parents will feel this way. Watching these two bundles of greatness grow into the wonderful young ladies they are has been the most precious thing I have ever had the pleasure to witness. It is just that I get a tiny bit sad when certain phases end. Brooke-Haze is saying “I can do it myself now” more often which means we are doing something right, but it is also another step towards her needing me less.

Mother’s Day

Laura was spoilt by the girls on Mother’s Day and so she should be. Laura is an amazing mummy and I am very pleased the girls have a strong, honest female role model to look up to as they grow up. Because Laura had to work the weekend; the girls and I decided Laura should be showered with affection and treated to top notch pampering both days. On Saturday we indulged on Domino’s pizza and enjoying the finest cookies for dessert. On Sunday I cooked Laura a top quality burger with chips, the girls had their trademark meatballs and pasta and for myself, I made Salmon with spinach, cabbage and green beans;  it was delicious, especially the beans.

I was not blessed with the kind of Mum that would be in the running for any Mum of the year awards, although she could win an award for running (away). On the morning of Mother’s Day, me and the girls went to go see Nan (who needs a Mum anyway when you are blessed with an amazing Nan). I wasn’t feeling great but wanted to go and make the effort to see her. When we got there, we went in to say our hellos and then I had to go get some things out the car. I opened the boot and before I started lifting, I had just kind of melted away down to my knees. I was exhausted, in pain but it wasn’t the pain that made me be on my knees, I didn’t fall, it was just like my leg had given up and at that point I felt like doing the same. I felt my eyes well up a little and I just stayed on my knees for a minute, calmly letting this feeling of sadness wash through me then got up like the f*cking awesome person I am and brought the stuff into the house. However, in my annoying tired state I had forgotten Nan’s cards and photos; stupid Dave. Nan was genuinely pleased we went over to see her; the girls love their Great Nan. Ember makes Nan read lots of books to her as she sits on her knee. She even made my 92-year-old Nan get up to help her wash her hands. That shows how amazing my Nan is, even though getting up and moving hurts and is difficult she still does it without letting on to those around her for selfless reasons. What a lady.

I wanted to make the day so special for Laura as I appreciate this day is bittersweet; I hope I achieved this goal. This year, in memory of Laura’s mum Jeanette, we planted a beautiful rose bush in our garden with the girls. Brooke-Haze still struggles to understand what happened with her Nanny and giving her something to look after seems to be helping.

MS Centre

In this beautifully boring city of Lincoln we have an MS Therapy Centre. I have spent my whole MS life purposely avoiding this centre because the thought of seeing what MS could do to someone scared me; and it still does a little. I finally decided it was time for me to put on my big boy pants and find out what the centre is all about and I am glad I did. I was nervous before going in but after a very awkward introduction by me my nerves settled. A very kind lady called Maureen sat with me and explained all the services they offer, with oxygen therapy, counselling and acupuncture being a few of them. I was pleasantly surprised and was particularly interested in the oxygen therapy. Maureen explained you sit in an oxygen chamber wearing a mask which pumps pure oxygen through as they pressurise the chamber as if you were diving. They explained this helps our bodies absorb more oxygen when under pressure with the intention to fight fatigue. I went away feeling pleased I finally went in and plucked up the courage to sign up for the oxygen therapy.

The day came of my first oxygen treatment came and I would be lying if I said I wasn’t nervous. When I arrived, it was a lot busier than the first time I went there and I felt a little out of place. I walked through to the oxygen chambers and met the lady who would oversee my “dive”. In the assumption I wouldn’t be able to take my phone or iPod inside the chamber, I brought two books and a notebook. One book was The Shining and the other was a book all about death (delightful reading for an anxiety sufferer whilst confined to a sealed chamber). They put the mask on me, and I was ready to go. I was able to keep my electronic devices at my own risk and sat with my headphones as I went deep into the depths of an imaginary ocean. My mouth was getting dry from the constant swallowing in attempts to alleviate the ear popping and I was paranoid I was going to either choke or swallow my tongue. Once we finally arrived at the desired depth my ears stopped popping and I felt calmer. I sat for an hour reading my books and listening to my iPod until it was time to come back up. I felt a little disorientated walking out the chamber but quickly found my legs again. I didn’t really feel any different afterwards, however Maureen did explain it is a treatment that needs to be administered regularly to feel any benefit. Hopefully I will start to see that benefit soon.

Health

I completed my 12 week Custom Fit Programme with Dom and felt really pleased with the progress I have made over the past weeks and cannot thank Dom enough. Having his weekly phone calls have helped keep me on track with both my diet and exercising. I have implemented changes to my lifestyle that I know will continue going forward. I am a little nervous to do it by myself, especially with the workouts and knowing what to do etc. but Dom being the great guy he is has recommended a book which will help further enhance my knowledge. Thank you, Dom. Anyone out there who wants to exercise but isn’t sure what is best to do, I recommend you book a free call with Dom; I will leave a link to his page at the bottom of this post.

Lately I have been feeling an almost overwhelming sense of unease. There has been nothing obvious to have caused this feeling but luckily, I was blessed with an over active brain which has been searching for a cause. I think this uncomfortable feeling is the product of little things accumulating to one huge weight on my shoulders. I have noticed my MS being active lately. I have been experiencing the same numb tingles in my left hand and foot that currently plague my right side. I have also been having other symptoms that I am not comfortable sharing just yet; I will update you once I pluck up the courage to speak with my MS nurse. This has naturally caused some worry; I sometimes feel the person I was is slipping or has slipped away which is an upsetting feeling to feel. I have been feeling quite lonely as of late. As I only work casually, I am home a lot and this makes me feel I am not allowed to be down. Because I am home a lot, I feel a pressure to be doing something more constructive with my time. Because I am not always at a workplace, I miss adult interaction and feeling useful. I believe I am strong mentally and am aware when something isn’t right, so I can take actions in time to try to stop it spiralling out of control. I have tried to take all the things that come with having MS in my stride, the pains, the feelings of isolation and having to adapt my life accordingly; it is not easy to do but I feel I have done my best whilst keeping a smile on my face. Whilst managing all of that, I have also had to deal with usual life stuff such as family loss, job loss/change, being evicted, becoming a responsible adult and a loving reliable father. When I stop and think about it all, I am proud of myself, but for some reason at times it doesn’t seem to be enough. I sometimes find myself chasing the acknowledgement from others, which isn’t who I want to be. Laura said once that she forgets sometimes because of how well I seem to cope with everything. That is a compliment, but at the same time it feels I am being punished for coping so well. Maybe all these worries are a product of my mind being over active? Maybe my own insecurities about my body and usefulness are getting the better of me? All I know is it has been a tough month and I will be glad to be rid of this feeling of unease and unsettlement and to get back to happy me.

Conclusion

This past month has shown me there is always room to improve yourself. I’d like to end this on a lighter, happier note. There have been lots of positives this month. Brooke-Haze having a wonderful birthday and got to meet two real princesses, I completed my 12 week fitness programme and Laura got promoted and started her a new job. Appreciation is a useful tool in fighting anxious feelings; it is also the key to true happiness. In the spirit of appreciation, I have a small but loving family, a handful of true friends, the best MS friends the MS community has to offer, the love of a good woman and two very important reasons never to give up fighting. Thank you to all of you.

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