black and white photo of a piece of barbed wire stretched between two tree which are out of focus

Usually about this time I give you a run down of how my week has been, but I’ve been struck with another hemi-plegic migraine which has scuppered plans a little.

What is a Hemi-plegic Migraine?

Hemiplegic migraine is a rare and serious type of migraine headache. Many of its symptoms mimic those common to stroke; for example, muscle weakness can be so extreme that it causes a temporary paralysis on one side of your body, which doctors call hemiplegia.

Basically, it’s the worst type of headache you can imagine, accompanied by partial and temporary paralysis. Sounds like fun doesn’t it!

My First Hemi-Plegic Migraine

The first one I had was in October 2015, before I got SPS. I went to bed early, the same time as the kids, because I had a migraine. I woke up a few hours later in incredible pain and reached out for my painkillers on the bedside table. Only, I couldn’t reach out, no matter how I tried. My right arm could move but I my left side was completely paralysed and I had no strength to pull my right side over my left. So I decided to call out for help. Only, I couldn’t call out, not only was my body paralysed, I couldn’t speak either.

At first, I thought maybe I was having a nightmare. But, the pain was so severe and I couldn’t remember feeling such pain in a dream before. So, I then thought that maybe I was dying and that scared me and I started to panic. But I could still breathe so I calmed myself down and concentrated on breathing. In 2,3, out 2,3, stay calm, stay calm. I don’t know how long I was like that, it could have been minutes or hours, I just don’t know.

Eventually I could move again, although I had painful pins and needles everywhere. I managed to sit on the side of the bed and grab some painkillers. After a while, when I was sure I could move again and the pins and needles had subsided I got back into bed and fell asleep. When I awoke, I still had the migraine, but the paralysis had gone.

I went to the GP and he said that I should have called an ambulance straight away. That’s not easy when┬á you are paralysed and can’t even shout for help. He said I’d had a suspected T.I.A which is a mini-stroke, and sent off a referral for a CT scan.

I never had that CT scan because before the appointment arrived I was admitted to hospital with paralysis from the waist down. This time I had no migraine, just pins and needles that had started in my hands and spread all over my body until I went numb and couldn’t walk.

That’s when I was diagnosed with Transverse Myelitis which was eventually re-diagnosed as Stiff Person Syndrome.

Migraine number Two.

My second hemi-plegic migraine happened in October last year. A week after my IVIG treatment at hospital. I couldn’t hold my head up because of the pain and the whole side of my face became paralysed. My husband took me to hospital because it looked like I was having a stroke. The hospital checked me out and said it was just a migraine.

A rare side affect of IVIG is meningitis, so I know we did the right thing going to get checked out. I would have felt daft going to hospital with a migraine, but to be honest, I was so ill that all I felt was pain. They gave me morphine while waiting to see the doctor, but it didn’t even take the edge off the pain. I did manage to sleep well that night though.

 

The Latest Migraine

Again, just a week after IVIG the third migraine appeared. Again I had temporary paralysis, particularly in my face. I felt more calm about this one as you do when something happens several times. I just went to bed and prayed that I’d still be alive in the morning. I was and after three days of pain I began to feel kind of normal again.

I’m seeing a link with the IVIG and the migraine, although I have had one treatment symptom free. I believe the key is probably hydration. I MUST not ignore my thirst, ever. I really need to get into the habit of having a bottle of water next to me at all times. IVIG thickens the blood and when the blood reaches the brain, if it is thicker it can trigger a headache or migraine.

Warning

My migraines have turned out to be nothing but migraines, but there are symptoms which I’ve learned that you should never ignore. Always seek medical help if you have any type of paralysis or numbness, pins and needles that will not go away and migraines that are really bad, in particular if you cannot stand any type of light, you cannot put your head to your chest because of neck pain or you have an accompanying rash of dark red or purple spots that don’t disappear when you press a glass on them.

Missed Out

Losing so much time in my week because of the migraine means that I’ve missed out on a lot. I couldn’t go out to the family meal for my niece’s birthday (although, I insisted my husband and the kids went.) We had a lovely sunny day that would have been great for a day out, but I spent inside feeling ill. And basically, I’ve had three days of not doing much at all.

Thankfully, I’m feeling better now and I am certain I’ll be able to shake the migraine hangover pretty soon. I hope so because I am going away this weekend on a blogger retreat! I’ll tell you all about it next week.

Do you have migraines?

 

Debs Random Writings

 

 

tea light candle in a glass jar spreading light across a table

I took this photo some time ago during one of our power cuts. I like the way the light makes patterns through the glass on the table.

I’m sharing this photo today in memory of little Jessica, a young warrior who went to sleep forever yesterday.

Life is way to short, and for some it’s even shorter. Sleep tight little girl x

 

Photalife

 

Sunday Snap

 

After a busy week last week I was kind of hoping this week to be less so. It hasn’t really turned out that way. I’d have loved to have had a week full of pyjama days, but that was not to be. It would have been nice to have had a week of fun days, but we haven’t even managed that. Apart from the usual shopping, it’s been appointments taking up our time.

G.P. appointments, clinic appointments and an appointment at the hospital for Star.

The good news is that we are getting lots of help for both The Little Man and Star from the Clinic (although for Star it means our least favourite treatment, but we’ve done it before so we’ll do it again.) The Little Man is being referred elsewhere which means he will be assessed for Autism or just to see what’s bothering him.

Then at the hospital we saw the maxillo-facial doctor who assured us that her jaw would get better in time and that the problems she had were quite common. I know, I already have a daughter who has had it for 18 years! The difference with Star is that she has Elhers Danlos Syndrome which means she has lax ligaments. If her jaw doesn’t improve quite quickly then it could cause permanent damage. Because of this the Doctor is going to see her again. Fingers crossed that it just improves with the exercises she’s been given. I hate to see my little girl (okay, not so little anymore) in pain.

What have you been up to this week?

The Reading Residence

 

 

I’m a laid back kind of person. I don’t let things play on my mind or get me down. Something bad happens, I deal with it then I get over it. I don’t keep going back to it, raking it up, as they say.

I let it go.

I try not to let people make me angry, I bite my tongue a lot. I let a lot of things wash over me without soaking them up.

I let it go.

I don’t let bad things that happened in the past haunt me. I don’t bare grudges, I forgive and forget. If I do something to upset someone else I will apologise, no excuses unless there is a completely genuine one, just a sincere apology and I hope in my heart they can forgive me.

Then I let it go.

So why do I let go of the hurt?

Holding on to the past and the things that hurt serves us no purpose. Going over and over it in my mind only hurts me more. Blaming others doesn’t help, especially if they do not accept they are to blame. If I hold on to all the hurt and pain then it will consume me and I will not be able to fill my life and my heart with happiness and carry on living.

Letting go is a choice I have made myself and committed to it. When those thoughts of hurt and pain start to appear I banish them quickly. I realise that forgetting is the hardest part, it so difficult to forget, and honestly, who wants to forget anyway? But when I start to remember I can put those memories back where they belong, in the past. It happened, I got over it, I let it go.

I watched my own Mother become consumed by the past, as she approached the end of her life she became bitter and sad and trusted no-one. I hated that she became that way and resolved never to be the same. Yes, my Mother had a hard life and had suffered so much, then her later years she was so ill but determined to carry on. There was some strength in the way she fought to live and fought for what she truly believed in. But not enough for her to leave the past where it belonged. She left me a letter to read for after she had passed away and it was the saddest thing I ever read. So I vowed I would never become my Mother. The past wasn’t going to catch me up.

How do I let it go?

I accept responsibility for the things that have happened to me. No matter how much I feel that someone else was to blame I know that I am in control of my life so I had some part to play. Something happened, I got hurt, the blame game doesn’t really matter, because if it did then I’d be holding on to the pain and hurt for much longer than necessary. Blaming someone else means holding them responsible for your life and letting them take over, they don’t have that power if I won’t let them.

I understand that my feeling matter so I express my hurt in a way that I find comfortable. If another person has made me unhappy then I will tell them. If I can’t then I’ll write it down or tell someone else. I have to express my emotions in any way that I can, but I don’t let them take over forever. I get it out of my system in a way that helps me understand why I feel the way I do.

Focusing on the here and now is vital. I have to live in the present and not let the past fill my mind and soul. I started to realise this when I got sick. At first I wanted to live in the future because I believed that I would get well again. But since realising that is not the case then the future doesn’t look so good now. So, no point in waiting for things to get better and no hope of ever making the past different. The only other option is to live for today.

It’s Not Easy

It really isn’t easy letting things go. Not just the hurt that people have caused you but the things that have gone wrong. The people who have left life way too soon, the illnesses, the disabilities, the way life has treated you. Sometimes I look back and think why have all these bad things happened to me, what did I do to deserve it all? But, that sort of thinking gets me nowhere and just makes me feel unhappy.

Sometimes it’s okay to feel bad. I’ve just had a real bad weekend when I let my feelings consume me. I was hurting and I lashed out. I even did the unthinkable and posted a sweary vague post on Facebook which earned me loads of sympathy from friends who had no idea what I was going through. I was embarrassed but I didn’t delete it because people cared, they took the time to post a little something in the hope they could make me feel better. This is not something I am used to and I felt uncomfortable, but sometimes it’s good to rant and let it out.

Then I let it go.

Grief is the Hardest Pain.

When my Mother passed away I felt so much pain. People gave their sympathy and told me that time would heal my pain. I was outraged, the pain was all I had left, I had to hold on to the pain, it would have felt almost sacrilegious to let that pain go. The pain of grief is a difficult one, you need to express it, you need to hold on to it, you need to feel it, let it consume you. But then it will fade into a memory of pain, then a memory of the person you lost and eventually, instead of welling up when you think of them you will smile instead. There is nothing wrong with this. You haven’t let your pain go this time you’ve just allowed it to grow into something else.

Grief stays with you a long time, and even when you have passed the stage of thinking of them all the time, there will still be times when grief consumes you again and takes over your emotions.

I always embrace grief, I think of my loss, and I let it fill me with sadness. I feel it, I accept it, I understand it’s how I need to be. It doesn’t last long but it’s always there.

Let It Go!

Pain is not justified, no matter how much we feel it is. The hurt can go away if you let it. I made the decision that I wouldn’t let pain and hurt take over my life. It wasn’t easy, it will never be easy, but it’s the best choice I ever made. I’m not going to die bitter and sad because the past is the past and today is today, and this could turn out to be the best day of my life. Even if it doesn’t, it’s still another day I’ve lived and for that I am thankful.

Admit it! You were singing this ­čÖé

Lucy At Home

Easter School

We have another week of the holiday left here. In fact we have a whole week and two days because the kids don’t go back until next Wednesday. That is apart from Boo who is doing Easter School in the mornings this week. She needs to get the extra practice in for her SATS in May. I could get on my soap box about the SATS but I feel I’ve done that enough already; and it’s totally up to Boo whether she wants to go to school this week or not. She can’t go every day because we have a few appointments that clash.

Stickers

Last week turned out to be pretty busy, I actually went out four days in a row! Of course, I had to go to hospital for two of those days. Then we did some food shopping and then some more fun shopping. The kids ended up with lots of new goodies last week, but mostly books, pens and decorations to use on their Littlest Pet Shop toys. It’s amazing how thrilled the girls are to be in possession of a new packet of shiny stickers. I also bought them some clay to do some customisation’s. The Little Man wanted a Minecraft Sticker book which was a good buy as he has spent ages sticking in it. He also enjoyed sticking his football player stickers into his Panini World Cup album.

We decided to stay in all weekend, but the Little Man still popped out with his Dad to run some errands. It really has been a life saver having Graham driving. He’s only had his licence for just over a year but he does most the driving now. I’m still waiting to see if the DVLA will let me have my licence back after medical checks. I haven’t been behind the wheel in a long time. Fingers crossed that I won’t lose my licence, I’ll be devastated at the thought of never driving again.

Plans

 

This week will be busy later on with hospital and clinic appointments for Star and the Little Man. We are also hoping to fit in something fun but I have to be careful now as we overspent last week.

Next Monday we are going out for a meal on my niece’s birthday which should be a nice family get together. I’m thinking of going without my wheelchair, if Graham can drop me right outside the door I know I can navigate inside the pub on my crutches.

I have felt some benefit from my treatment last week, although there was a wobble this weekend when I ran out of medication. Graham went to pick it up from the chemist that had my prescription on Saturday morning, but it was closed. I survived on a lower dose, but I really noticed the difference.

While I was in hospital last week the nurse asked me if I’d considered having the treatment at home. I was a bit flabbergasted and told her I knew nothing about it.

It then got me thinking so I asked about it on my help group. A few overseas patients take the immunoglobulins with a┬ásubcutaneous injection so I looked up the system that they used. It is available here but it depends on whether your consultant can get it approved and you have to be trained how to use it. The more I think about it the more it appeals to me. I will think about asking my consultant next time I see him. But I’ll also ask that nurse for more information too.

 

Debs Random Writings