Latest MS neurologist appointment

So my latest neurologist appointment hasn’t gone so well. Firstly for anyone that follows from the last post my neurologist does not support the use of antihistamines to manage MS. (Didn’t tell him I was doing my own trial).

However his reasons for not using antihistamines did not seem to be about if they would work or not and rather more about how expensive it would be to run the trial and that no one would fund a bigger trial (and the reasons why this was).

I’m starting to think that neurologists are a different breed of people (there must be a joke there somewhere). I told him that I had been feeling tired lately and that I have been getting a weird burning sensation in my leg which then goes ice cold. I also explained that I have been tired most of the day, most days recently.

Its now only a few days later that I am thinking more about this conversation, his reply to this information that I gave him was that I was having a relapse and I needed to get MRI scans to see what was happening. I asked what I should do with my symptoms and should I carry on as normal or try and get a bit more rest. I was basically told to ignore them. And then based on the scans we would decide what medication I was starting.

I had went from someone who was “healthy” to someone who was relapsing, he had completely devastated me and he had no idea. I got out of the hospital fast and phoned my partner and explained what had happened. I couldn’t stop crying and this was completely out of my control, there was nothing I could do.

I phoned my GP and through the tears told her I didn’t know why I was phoning as I didn’t know what she could actually do to help, but I wanted to tell her incase she could do something. (She must have thought I was an idiot, and I kept saying sorry to her for crying.) She signed me off work for a couple of weeks to get my head around what was happening. And that when I realised that the neurologist asked next to nothing. He was interested in my physical symptoms. But as far as the fact I haven’t had a full nights sleep in weeks, I am a single parent of two young children, it’s coming up to Christmas, I have a mental ex husband and a stressful job. Surely these thing should be considered and there comes a point where I need to slow down. I don’t think my body can cope with everything that I am trying to do. He didn’t even ask how sore and uncomfortable the pain was that I am experiencing or tell me what I can do to help with it.

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Antihistamines Helping MS?

Sorry I have been so busy recently I haven’t had time to think about posting anything. Recently I read some research about how antihistamines can help repair the damage to the myelin sheath caused by MS. So what would any responsible person do when they read this? You guessed it I sourced some antihistamines to give it a go myself.

Fortunately I have a friend who works in a chemist so I sent them the research to read and see what they thought. To my surprise but also delight they bought a packet in for me to try. The research states that the trial had people taking the equivalent of 6 tablets a day and the most common side effect was fatigue. Ok so I started fairly low with only one at night. And even that made me drowsy. After a week or so I increased the dose to 2 at night. I stuck at this dose for a few weeks and realised that if I took the tablets too late then I would be really tired in the morning.

I took these tablets each night only missing the occasional night (either forgot or it is important to note that they can not be mixed with alcohol). Then I started to notice the improvements. First I realised that my memory was getting better (more like it used to be anyway) and that’s when I checked my eyesight. My left eye has been left with damage from optic neuritis last year and it has left my eyesight in that eye like the brightness of the TV is turned up to high. This seemed to be starting to heal though. Is this all a conscience or are these antihistamines actually working? I suppose only time will tell.

Tragedy but a mothers first priority is her own children!

So my ex is having another baby. Which is fine by me. Not that I was consulted. But I was hoping that this would take up his time and he would effectively leave me alone.

But I get a message today to say the baby has died and they are booked in for a still birth this Saturday. Can I keep the boys as he’s meant to have them this weekend. (Not a problem). But he also says he wants to tell the boys what’s happened (they are both under 6)

I ask if he should consider saying to them that he made a mistake there is no baby and avoid the details? I’m thinking what is best for the kids here. This could be traumatic and we should be protecting them.

I wasn’t expecting this reply that I got.

“I understand why you suggested that way but I don’t feel comfortable dismissing the baby like that. They have seen a scan photo in a frame in our living room and will see the frame I plan to make for the baby and will wonder who it is. I think maybe keeping the chat on par with how we told them about x (the dog) may be more appropriate. I know they will have a very limited understanding but I’d like to still give the baby a place in their memories. I won’t involve them in the funeral though, I think that’s an area they can be kept out of but maybe when they are much older they can come to the grave side.

I doubt the boys have said much to you but we have talked about it quite a lot. As in we count the seats in the car and seat number 7 is for their brother or sister, they understood that their toy room was to change into a bedroom but we’d still always make room for toys, they chatted excitedly to gramma the last time telling her about their new baby brother or sister and showing her the photo. I don’t think covering up would work for them or be fair to them or to their baby brother. I think more that I need to think what to avoid, for example not say dying or dead and I wondered what you had told them about (the dog). I wonder if heaven is a concept which may be ok if we don’t relate religion to it.”
Please be honest with me anyone who reads this. If he was still in a relationship with the mother then I could understand this.  But he’s moved on to the next person. I believe he also asked for this baby to be aborted and then a paternity test, he had known about the baby for a few weeks.

Surely bringing young children into this adult situation is not appropriate. I’m beginning to question his motives and ability to protect the children he already has.

I feel I have to add, I wouldn’t wish this upon anyone and I feel for them, I really do. But the children do not need to be involved in this. They are too young. They don’t need to be told and then reminded about a sibling that died who was going to be raised from the start outwith a relationship.

Ex is having a baby with someone else. 

So here’s a quick summary of how we got to where we are.

He had an affair and I suspect had a relationship after with same girl – introduces her to the kids.

She moves away and he meets another girl – refers to her as a fling (kids haven’t met her).

Then meets another girl – introduces her to the kids and me. She’s met the kids about 2-3 times and then he gets told by the fling that she is pregnant approx 15 weeks. (Tells me this with new girlfriend in the car and tells the kids they have a sibling on way)

I speak to the kids as I’m worried this is more for them to take in and absorb. My eldest tells me that it’s daddies baby so they should ask him and not me.

I have a conversation the next week with my ex to say I think he told the kids to early.  And really he needs to think about them. He’s questioning paternity so how appropriate is it to tell them a sibling is on the way.

I’m starting to feel that every mess he creates he drags all of us into it as well. Surely things have to get better soon.

Take the godamn photo thoughts.

Have you seen that blog about a mum pleading to dad’s to take the photo that captures a moment with the children? blog link here
So as I’m sitting with what feels like the weight of the world on my shoulders my mum friends are chatting online and sending pictures of their baby bumps.
Ive had this realisation before, but for some reason it really bothers me tonight. I have 1 photo of my baby bump through my 2 pregnancies! And when I took the photo that I do have I was told I was being ridiculous and I can have photos of a baby soon instead of photos of me. After that I don’t think I took any photos second time round.
Those of you who have read any of my blogs will know that my marriage was tainted with domestic abuse. That relationship ended 2 years ago. But I am still only just realising the true extent of what I went through although I know is it is nothing compared to what some women experience.
But you can move on and you can become stronger.

Fitness and MS, then the ex returns.

So I haven’t written any blogs for a while. Until today I felt life was settling down. But I had noticed that i was putting on weight. Not much maybe about 7lb but my clothes were tighter and uncomfortable.

So I decided that I would start a new regime. First of all during my lunch at work I would go a walk. My time is restricted so I managed just over a mile today. I’m hoping that I can do a bit more as I get quicker and fitter. I was thinking that blogging about my fitness activities may encourage me to do more and planned to start blogging regularly again tonight.

I felt better for walking today and hoped that it would have long term benefits as I know that staying active and healthy with MS is essential.

I haven’t been taking my vitamins recently but decided again to take them regularly and generally I feel better with them.

So after all the events of last year the contact arrangements between myself and my ex have settled down. We still meet in a neutral place as I feel more comfortable with this. But today he tells me that someone he used to know has got in touch with him… he had a “fling” with someone and now she is 15 weeks pregnant and he has told the children tonight.

30 minutes left

I realised that I can’t wait till 3pm, I have children to collect. Children to look after and I need to be prepared to put on a show and be happy for them.

So about 10 minutes ago I sent him this message

“I wish I could talk to you, but I can’t right now. It hurts too much. I can’t believe you would ignore me on my birthday.

I can’t help you anymore, you need to learn to help yourself. Me avoiding all male contact isn’t helping you, it’s reinforcing your beliefs that I can’t be trusted.

You will go through this with any girlfriend you have unless you can exclude them from all contact with males.

I love you but I can’t do this anymore. I’m sorry xxxx”

 

My friends all told me I was being stupid that he would realise what he had done and would be sorry today. I am so disappointed that they were all wrong. Since he hasn’t even replied to my message.

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