Today is also 3 weeks after my 32 year old husband Mark was diagnosed with MS.
Mark and I have been together 3 years, we met through an online dating agency (not that I like admitting that in public!) After talking to him for just a week, I knew he was special, even before we met face to face, I was fighting hard not to tell him that I loved him.. crazy talk I know.. but I just knew... we met the following weekend, and from that moment our lives changed.
Within 3 months, Mark and his bearded dragon Carlito, had moved in with me and my 3 children from a previous marriage. They adored Mark from the off, and him moving in seemed so natural to us all, no discomfort, just 'normal' he was (and continues to be) an amazing step father.
Within 7 months, I was waving a positive pregnancy test under his nose, I've never seen any one so over the moon at the prospect of becoming a daddy.
Christmas morning that year, the children were in our bed opening presents and Mark gave me mine, a gorgeous diamond ring and a proposal of marriage.
We went on to having a gorgeous baby boy July the following year.
Now, reading this, our relationship does sound so perfect, everything I ever wanted in a man was in wrapped in this wonderful package, if only it was that simple.
From the beginning Mark was very open, he told me that a few years prior he had suffered from Optic neuritis which is a
multi-etiological condition consisting in the inflammation of the optic nerve that may cause a complete or partial loss of vision.In his case he lost his vision, but thankfully it came back.
He was told that he had a 90% chance of developing Multiple Sclerosis, they couldn't tell him when just that he was more at risk.
When he told me, I just took it on board, to be honest, I didn't really think too much about it, I mean I was in love with this man, he had come into my life, stood by me whilst I had a bout of radio therapy, took on 3 children, made us all so happy, so what if he was at risk? I mean, there was 10% chance he wouldn't get it.... I shrugged it off....
But....
It was always in the back of my mind, never forgotten about, especially when things in our relationship started to change, without any warning or any excuses....
Mark started having odd mood swings, he would be the happy go lucky Mark that we all knew and loved, then at the drop of a hat, he could just turn, he would snap, mainly at me, but sometimes (not often) at the children, our eldest daughter would get quite upset not knowing what she had done wrong. Their own father wasn't a nice person when we were together. So when Mark came into our lives he was like a breath of fresh air.
But when these moods hit, it was an all too familiar feeling for us all - this frightened them and me to some extent. I didn't want to be going through that again.
Another reason I blamed myself... I thought it was me, that I caused this within men... Silly I know.
I would talk to Mark about it and ask what was wrong, but he never knew, he couldn't explain it. It was like living with Jekyll and Hyde, he was unpredictable, you never knew which Mark you'd be getting, It was so hard for me, because this was the man I loved more than anything in the world, it made me think hard about what I wanted.
Deep down I knew it wasn't the man I'd fallen for, that something wasn't right
Next to go was the libido, this hit me hard, Yes, in the time we'd been together I'd had a baby, but I wasn't huge, but at one point he blamed me saying it was because I put on weight, so I joined a boot camp, lost weight, changed body shape, ate well, but despite MY changes, still nothing between us had changed. I felt unwanted, unloved, I was given promises that things would improve he insisted it wasn't me but him.
During this time, I was really unfair to Mark, in fact looking back I was quite cruel at times, things got said, things that can't be taken back and I will always regret that. But thinking on it, Mark would probably say the same,
Mark also started sleeping more and more, he was constantly tired. He's a HGV driver and he works nights, we were planning a wedding, which was stressful in itself, we were also in the middle of buying a property, so at first I put it down to that... but it started getting worse, on nights off, he would fall asleep by 7pm and sleep for 12-13 hours not even hearing our son wake up.
Then would still complain of tiredness!
Mark also had a tremor, which he had been on propanol for a number of years, but the tremor seemed to get worse, it wasn't constantly worse, but there was times he'd lift a coffee cup and the contents would spill. He'd often bring it to my attention, and it was becoming more frequent.
He suffered from horrendous headaches, complaining of eye pain, this worried me, but he ensured me that they were just migraines.
Because of all of these symptoms, I begged him to see our GP, he finally agreed, I went with him, he was prescribed some antidepressants, and a referral.
On seeing the consultant, she was convinced herself that it was just headaches 'migraines' I am personally a migraine sufferer and didn't believe this to be the case. But Mark was adamant there was nothing wrong. They both looked at me with disbelief, but why would I lie? I had nothing to gain from it. He was prescribed medication where if he got a 'migraine' he could inject himself.. something he wasn't keen on doing. He had admitted to her he was very stressed, he was having violent outbursts at work, losing his temper easily, and even had a nasty fight with me, it got out of hand, something that he is incredibly ashamed of. When we spoke about it afterwards he said he felt like he had no control of his actions.
She said it was all down to the stress offering him stronger medication to calm him, especially before the wedding. He was also offered oxygen, he put the mask on in her office (which didn't help) and was told he could ask the GP to see if he would get funding for a tank for home.... Yup he didn't bother.
He would also have to clear his throat constantly, she blamed this on Mark giving up smoking, but a year in he was still doing it, so she agreed to put a camera down his nose, this didn't show anything, so nothing more was said. Another thing with no explanation.
She wanted to send him for a MRI scan, Mark was not keen due to being claustrophobic, he finally agreed to travel to an open scanner. I wasn't happy as I knew (and she told us) that the open scanners weren't as good as closed... but I had to go along with Marks wishes.
On the results from that scan, she could only see 2 lesions on his brain, nothing of any concern, she was happy for him to go away and see her again in another 6 months.
I however continued to do research, talking to Marks Mum who was the only one who would listen, who could see for herself that her son was changing, after all she knew him better than anyone. She would insist I push, that he wasn't 'normal' that his behaviour wasn't 'normal' despite him trying to convince me otherwise.
On the 11th of December 2013 we stood in front of our friends and family and said our vows, by that point, I was marrying my husband knowing that in our future things could get tough, and I was prepared to fight a battle that most people would rather steer clear of, even if he still wouldn't acknowledge there was something wrong.
It was one of the most amazing days of my life, with memories I shall treasure forever.
We traveled to the Maldives for our honeymoon, the most romantic place on earth, sun, sand, sea, the most amazing accommodation, truly beautiful.... yet... and it hurts me to write this... it wasn't like a honeymoon at all... there were all these loved up couples around us, and then there was us... Mark spent a lot of time sleeping, so I would sit read and to many peoples dismay I would sit on Facebook, comments were made as to why I wasn't doing what newly weds do.... but my new husband wasn't interested... surely that wasn't right? 3 nights in, we were already arguing - yes about intimacy.
In January, I was taken into hospital and had a cancerous lump removed from my cervix, I then had to see my consultant, he advised that due to me having 4 c-sections there was no other treatment than a full hysterectomy...after me putting it off in fear of the toll it would take on Mark, it got scheduled for the 8th May.... great more weight put on my husbands shoulders...
But, things really started getting worse, to the point Mark was not only noticing, but telling me of the things that were happening. He started walking into things, his balance completely off.. he would bump into door frames constantly, he started having little silly accidents at work, like trapping his fingers in between cages, his foot in the trucks tail lift, he'd drop his keys, and not know why. He'd have muscle spasms in his legs.
His hands and feet were cold (His family had a history of Raynard's so he put it down to that) but he in actual fact he had numbness and didn't even realise.
One bug bare of mine was that I would tell him things and he would swear blind I didn't he was convinced I was lying, I could tell him where and when I said it, but he was really insistent that I didn't, I would get so frustrated, in fact I could tell him multiple times and he wouldn't remember what was said.
Long term memory he was fine with, he could tell me funny anecdotes about him growing up and remember it in picture perfect detail, but he couldn't remember something I had said an hour previous.
So, by this point his 6 months were up, we went to see his consultant, I basically told her in no uncertain terms that I was unhappy, he finally admitted to her about all the issues he was having. She told him he would need to have a proper MRI scan. He looked at me.... here is where Bitch Debbie kicked in... IF he wouldn't have the scan I was refusing any treatment, so he finally agreed. She told him 'If anything shows up on the scan we'll be in touch, if there's nothing, we'll just review you again in 6 months and you won't hear from me'.
The day of the scan, wasn't a good day for Mark, he was panicking even if wouldn't admit it. He was picking fault with me all day, it ended with me walking out of the door with the children in tow. Mark called me, told me to go home, he went to his friends house so we both could cool off, his friend, promising me he would make sure Mark went for his scan. Mark did go, my words fresh in his mind, he texted me whilst he was there, wishing I was with him, me feeling guilty that I wasn't.
He was surprised that it wasn't as bad as he had first thought, it wasn't the same type of scanner he had been in the few years prior. He came away still utterly convinced that he wouldn't hear anything.
Me however, every single time the postman came I was scanning the brown envelopes for the familiar NHS postmark.... that letter came, asking him to come and see his consultant 10 days later.
I felt cold in the pit of my stomach, my fears and concerns were about to be confirmed, for Mark, well he had convinced himself that she was just calling him in to tell him it was all clear - just to put his mind at rest... He STILL didn't want to believe anything was wrong.
The date came, we sat down in her office, she didn't say much, she turned straight to her desktop, brought up his scan pictures and started pointing out white coloured blobs... lesions... about 11-12 odd... lesions that weren't on the scan 6-7 months ago **or that couldn't be seen 6-7 months ago**
Mark just said 'So this is a diagnosis?' to which she replied 'Yes, you have MS'
She didn't look me in the eye, or at all really, which I'd just as well.. Less said about that the better...
Our son started being a bugger and I had to take him out of the room, leaving Mark to discuss medication, he was offered 3 types, an injection he'd have to administer himself every day, and injection he would have once an month, and finally a tablet form.. which he opted for... my husband is absolutely covered with tattoos.. but he's a complete wuss when it comes to needles.. go figure!
Mark is due to start Teriflunomide later this month, its a very new drug which has literally only just been licensed, side effects can include, sickness, hair loss and if he wanted to have children, he would have to stop the drugs for 2 years, thankfully our family is already complete.
It can also cause damage to his liver and kidneys so he has to have regular blood tests, so it seems he cannot escape the needles after all.
His consultant is hopeful that this will help his fatigue which recently has been really bad, to where the children are referring to it as 'Nanny naps' he can be fine, then all of a sudden he'll just be dog tired that he has to nap then and there.
When we got home from that hospital visit, Mark went through a whole range of emotions, from tears, to anger, to wanting to do everything he can to combat this illness.
But then he also went through a stage of feeling sorry for himself... this was hard. Anyone that knows Mark would tell you, that he is a very proud person, he works hard for everything we have in life. He started panicking about losing his license, thinking he wouldn't be able to drive again, he'd lose his livelihood (the consultant is happy for him to continue working for now) He then started blaming everything on having MS, every time something was mentioned or he couldn't do something I was greeted with 'But I have MS'
That didn't wash well with me, this was the man, whom I fought with to get help, who refused to believe he was ill, was suddenly using it as an excuse to hide behind. He kept saying that I wanted to leave him, that I was looking for an easy way out, he had forgotten that I married him knowing something was wrong, I married him for better for worse, in sickness and health.. so NO I wasn't looking for an easy way out..
I am a strong willed person, I speak my mind especially to those that I love... I basically told to him to Man up, asked where had the fight gone? It must of worked because his attitude changed. He got in touch with the MS Society where he spent an hour chewing the ear off a very helpful lady who put his fears to rest.. - (Dr Google has a lot to answer for!) they sent him out lots of literature/publications. told him to look for local groups for support, which he is currently doing. He is staying active, he goes to a strength training gym, where we've had a lot of advice on diet and supplements, he now rattles when he walks! A lot of our friends train there, he knows the trainers and he has a lot of support as they're aware of his condition.
Which leads me to this blog... I looked for support online.. there are forums on the MS society but having read through, there's nothing that helps me... the wife.. there's no one that explains the changes within their loved ones.. Yup there are posts from carers, who have watched the demise....I don't want to read things like that if I am honest... yes there is a chance that my husband could end up in a wheel chair, or may lose control of some of his facilities, who knows if this is going to happen or not, he could spend the next 20 years as he is now... no two cases are a like. There's no way to tell what to expect next....
But where is the spousal support that tells you that, where is the support that gives you a virtual hug when things get tough... because things do, they have already... and I've blamed myself for a lot of whats happened. There hasn't been anyone to tell me otherwise. I hope that someone will read this and be able to relate. If not, then for me it's like chicken soup... getting out my feelings, so my amazing husband can read my thoughts and be able to get some insight as to what it is that I am going through, that his illness is affecting all of his family, because sometimes its hard to address issues, or accept them. Sometimes it's hard to voice them, because you don't want to cause any more pain, because it's hard to deal with the situation as it is.
We're having to move house soon... we're currently looking for somewhere... more pressure! But this week, Mark upped his antidepressant and has been coping really well, his moods have improved some what, plus as mentioned hes on supplements - 10 x Vit D3 twice a week 3 Fish oil every meal time and a really good multi vit. So I'd like to think they also help. I am also trying in vain to get him to change is diet.. on the run up to our wedding we followed the paleo diet (not that it's really a diet) but when we got back from honeymoon and we wasn't training we slipped a lot. But now I am preparing all meals, lots of protein, no carbs, sugars or dairy... apart from the food he steals like chocolates and cakes from the kids!
He actually used the words 'I'd rather end up in a wheelchair than give up cake' now this may have been said in jest, but later in the day thinking about it, it made me well up, he knows how upset I get that he keeps going against me with food.
If it was me, and I was told that a diet change could help my illness, I would try it... whereas Mark's reaction was the opposite.. it was 'I'm not letting it control me' well that I agree with, but the food aspect... well that's a different ball game!
He's not alone though, I too am following it, I've cut out all the things he has too, he thinks we shouldn't both have to 'suffer' I, however do not see it as suffering, I see it as getting healthy, lets face it, I could do with losing a few lbs!
Let see if it makes a difference... only time will tell....
If you have got this far, thank you for reading.
I am hoping that I can be support for someone going through the same thing, sharing is caring right?
Debbie xx
