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Raisie Bay

depression

I’m no Superwoman

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Superwoman in Shenyang China, hanging from a building

Photo by Harry cao on Unsplash

It’s been three years and three months. I look back, no, I am forced to look back by bloody Facebook, on the things I said three years ago.

It’s okay, it’s not bad, I can do this, I’m not going to let this beat me.

I can’t do this anymore.

I’ve said that so many times. It’s bloody hard waking up in pain day, after day, after day. It’s even harder trying to fall asleep in pain, night, after night, after night.

The pain is constant, it never leaves, it’s part of me now, something I just have to deal with.

Does that make me special, am I superwoman because I can cope with pain every day and still make a joke, say something positive, or even smile?

Hilarious

I laugh sometimes, especially at the Impractical Jokers (Comedy Central.) Yes, Sal, Murray, Quin and Joe have me in stitches, even though it’s not the kind of humour I usually enjoy. Sometimes it’s nice to have a little stupidity in your life. I’m going to see them in October, Live! I’m so excited.

It’s also a depressing tale. My daughter bought the tickets while I was really ill a while ago. She came up to my room and told me. I spent the rest of the evening (night, day, I don’t know, I was ill,) worrying about it. She’d booked front row tickets for us, spent a fortune.

I can’t sit in the front row, I’m disabled. I have to sit in one of the special places for wheelchairs. My daughter was annoyed, she insisted that I’d be able to walk in and sit at the front. I walk around the house after all. Even if I could I wouldn’t be safe in an emergency, I would be breaking violations. I’m not allowed to sit there.

It was then I realised that no-one, not even my family members understand.

I can’t do this Anymore

I am in pain, constantly. Every step I take hurts so bad I’m longing to be done with taking steps. I get up to put my phone on charge on the other side of the living room. Yes, I can do it, but no-one understands the effort and pain.

I can help my husband cook a meal in the kitchen, I have a stool, I have counters to lean on. Taking something to the sink or getting something out of the fridge is a lot of effort. At the end of cooking I can’t wait to sit down. I don’t enjoy my meal because I’m hurting.

This happens in front of my family on a daily basis, but they still don’t understand how I feel, how much it hurts.

I can walk from the living room to the kitchen and visa versa. I don’t want to do it twice though. I get up to answer the door when someone knocks. I’m exhausted by the time I get there, from the pain and the effort. I still do these things because if I don’t I’m giving up.

I could give up, boy, I so want to sometimes. I just don’t want to do this thing anymore, this life, this existence, any of it.

I want My Life Back

I want the old me back, I want to be able to run around after my kids, pop to the shops when I feel like it, walk up the garden, or around the park, drive a car, visit people who have doorsteps.

I want to go to the dentist and the GP on my own. I don’t want to go to the hospital any more.

I want to be able to visit my Mother’s grave, tend to it, clean away the dead flowers and polish up the headstone.

I want to be a Mother again, take my kids to school, go to parents evening, take them out, play with them.

I’m no Superwoman

I hate this, I hate the me I am. I’m no superwoman just because I post something positive on Facebook, or here on my blog.

I have always been a positive person and that’s not going to change. Because despite everything, if I don’t stay positive then what is there?

When I say I don’t want to do this anymore, it makes people angry. I have no right to give up, I have family, I have a home, I have a lot more than a lot of people. Hey, I might even have a future if I’m lucky.

And Cats, Cats are nice

So, I swallow up the bile, live with the pain, and just do it. I get up out of bed (sometimes I really don’t want to, the pain is so bad, but even though I’ve begged for help it’s not happened, so I just get on with it.)

And that’s it, that’s my life.

I’m no Superwoman, I’ve got no choice.

I don’t want sympathy, I don’t want to know how amazing I am, I don’t want people to know what I’m really thinking.

I didn’t chose this to happen, I’ve done everything I can to heal myself but nothing has worked.

And I don’t know if I can do it.

Oh no I’ve said too much,

I haven’t said enough

R.E.M Losing My Religion

I won’t give up, I can’t give up. I know what it’s like to lose a parent, it’s hard at any age and my youngest is only eight (the age I was when my Dad died.) I have to keep fighting. I have no choice. But wouldn’t it be so nice to be allowed to sleep ……

And Dream of Sleep

Little light shining
Little light will guide them to me 
My face is all lit up
My face is all lit up
If they find me racing white horses 
They’ll not take me for a buoy

Let me be weak, let me sleep and dream of sheep


Oh I’ll wake up to any sound of engines
Every gull a seeking craft
I can’t keep my eyes open 
Wish I had my radio 
I’d tune into some friendly voices Talking ’bout stupid things
I can’t be left to my imagination


Let me be weak, let me sleep and dream of sheep 
Ooh, their breath is warm
And they smell like sleep
And they say they take me home 
Like poppies, heavy with seed 
They take me deeper and deeper

Songwriter: Kate Bush

“Reflections

Let Me Not Beg for the Stilling of my Pain. I need a Miracle

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It is during our darkest moments that we should focus to see the light - aristotle
photo credit Annie Spratt – Unsplash

Today I’m off to the hospital for my third round of IVIG (Intravenous Immunoglobulin.) The first time I had big hopes that it would be my miracle cure. The disappointment after nearly broke me. The second time I had less hope but thought it was worth it to keep trying, I’d had a lot of people telling me that it gets better each time you had it. I had a little relief from some of my symptoms, the tingling was reduced, I had a little more energy and my twitching was decreased. However, the side effects were huge giving me massive migraines worse than any I’ve had in my thirty year experience of migraines. This week I am prepared, I’m going to keep hydrated, at least three litres of water a day. I will take pain killers at regular intervals, and I’m going to ask for  slower infusions which can help. I am hoping that the results will be better than last time and that the side effects will just leave me alone.

I’m going to be honest. Life isn’t good at the moment. I have so many issues going on and I feel useless, helpless, I just can’t cope. How can I be there for others when some days I can barely hold my head up. I can’t deal with it all, it’s driving me down into the darkness. And if life’s problems are not enough, my health is truly depressing me. I’m scared, really scared, I’m not improving, I’m getting worse. Some days I really believe that I am dying.

I need someone to rescue me, to save me, to make everything okay again.
Maybe that someone is me, maybe I’m the only one that can do this. Let me not beg for the stilling of my pain, but for the heart to conquer it. Maybe there is a miracle out there somewhere.

Let me not beg for the still of my pain, but for the heart to conquer it
photo credit David Ragusa – Unsplash
School Runs and Shopping Trolleys
Debs Random Writings
Naptime Natter



Happy New Year!

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Happy New Year to all my readers!

I know I’m a little late but we had an awful Christmas and New Year’s Eve, so last night we had our traditional munchies, film and family time and it was much more relaxed and finally we can celebrate the New Year.

Although it was a really tough week I’m happy to report that the kids had a great time. Their little face on Christmas day where all I needed to make Christmas special. There is nothing like that feeling and I will miss it when my young ones grow up.

So, with Christmas over it’s time to start thinking of the New Year and what it will bring. Yesterday marked my second anniversary of being ill. Next week is the one year anniversary of my actual diagnosis, Stiff Person Syndrome with Progressive Encephamyelitis with Rigidity and Myoclonus. 

Next week I go into hospital for the third round of IVIG (Intravenous Immunoglobulin.) The last time it left me with the most horrid migraines that I thought I was dying. Seriously, I’ve been a migraine sufferer for over 30 years and I’d never experienced anything like it. It was also a hemiplegic migraine which meant I also suffered paralysis and my poor hubby thought I was having a stroke and took me straight to A&E.  Next week I am going to be more prepared, plenty of water (at least 3 ltrs a day) and regular pain relief. I am staying positive. The first time I had IVIG I thought it was going to be my miracle treatment and when it didn’t work I plunged into depression. The second time, after the awful migraines had stopped, I did see some improvement. It wasn’t the miracle I seek, but a little relief from some of my symptoms was well received. Unfortunately they didn’t last. I can see myself getting worse all the time and this scares me so much. The life expectancy for someone with my condition is 3 years and I am now into my third year! The good news is that the condition is incredibly rare so it’s difficult to go by the original life expectancy because most of the deaths were in the early days before they had worked out any kind of treatment. Also, most of them had other conditions as well, cancer, diabetes and epilepsy. I don’t have any underlying condition that is life threatening.

Next week I am hoping for less side effects and more positive results, those who have IVIG regularly tell me that it works better each time (but it also stops working after time.) I have to stay positive!

I’ll be honest with you, my positivity has not been around for the past week or so. I wanted to take a break from my blog and social media because I felt that being negative was not the impression I like to give. I like to show my positivity, I’m faced with so much trauma every day but I find sharing positive blog posts and messages helps to keep me focused. However, when you are feeling low and close to wishing this life would end right now, it’s so hard to express exactly how you feel without it looking like you are seeking sympathy, or even worse, trying to make others feel bad.

Sometimes, though, you have to be honest, and honestly I’ve been feeling CRAP. Everyone around me, apart from my little ones, has made me feel sad and low. My illness has been awful, I have felt so so ill, and all the time all I’ve wanted to do is enjoy the holiday and feel the Christmas spirit. And my family has just made me feel worse. I’ve put up with so much sh*t in the past week, too much. If it wasn’t for my little ones I think I would have just given up on everything.

But, my little ones have been my joy in the madness. They have been so happy and carefree. I may have been frustrated with them a couple of times but it was nothing that I’m not used to. Also, my little Star became a young lady over the holiday. She’s really growing up now. I know she is behind in maturity, but some things you can’t delay, and a 5ft 5 inches you cannot think of her as a little child anymore.

So, today is a new day and despite the fact that my arm has gone into an incredibly painful spasm that has now lasted more than 12 hours, I am going to keep plodding on and dig deep because my positivity is in there somewhere. I cannot allow myself to go into this year feeling so low.

I have much to look forward to this year. I am staying hopeful that next weeks treatment will be a good one. Then in April I am going on a fabulous Blogger Retreat which I’m really looking forward too. In August we are having our first 7 day holiday in many years (We usually just have a short 4 day break) the kids are going to be so excited. There are places I want to go, things I want to see, memories I so want to create. If this is going to be my last year it’s going to be great! But of course, it’s not going to be my last year, I’m not ready for this stupid condition to beat me yet. I’m ready for a fight!

It doesn’t matter how many times I fall, I will always pick myself up and carry on. When I did the Activation Game  I exercised being the best possible version of me for a day. It’s always a great thing to strive for, being a better version of yourself, and something that I often try to practice.

How about you?

Happy New Year

School Runs and Shopping Trolleys
Debs Random Writings
Naptime Natter



Not Today, Today I’m Feeling Blue

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Our Summer holiday is half way through, we still have another four weeks to go of this extended holiday. So far we have, had a birthday party, visited relatives by the sea side for a weekend, had another, quieter, birthday lunch and have been out to the shops three times. It doesn’t really sound a lot for four weeks does it?
For me it’s been exhausting.
It seems that every time I leave the house I need at least two days to recover. Also, we are still having major problems with Star and it’s so difficult to get her out.
This is not the summer holiday I wanted. I wanted to make it one they would remember. A really good happy time with lots of fun. I don’t know what sort of condition I’ll be in next summer as I feel myself getting worse day by day.

I got really upset this last weekend, simply by reading other blogs. It seems that everyone is off on days out, going to festivals, enjoying holidays. Doing the normal things you do during the summer holidays. Doing the sort of things I wanted to do. But my stupid body won’t let me.

We had a lovely weekend in Dorset, I really enjoyed the break from routine, the sunshine, the change of scenery and the fact that the kids had a good time. What I didn’t enjoy was not being able to get to places, the fair was a nightmare for my wheelchair. I couldn’t get on the beach and play with my kids. I wanted to sit in the sand and paddle in the sea. I wanted to run around and play with my kids. I wanted to go over the rocks hunting for  fossils.  Instead I was often left behind on the promenade. I love being by the sea, just taking in the air and the scenery was lovely, but I felt I was kidding myself because I wanted to join in too.

Two people hugging with the text, sometimes when I say I'm okay I need someone to look me in the eyes, hold me tight and say, I know you're not

Every time we plan to go out we have to take into consideration my wheelchair. Will I be able to get around, will there be parking close by for me? If it’s outdoors I have to consider the weather, it’s an electric chair, too much rain is not good for it. (or me)

Even a simple shopping trip can be difficult. What if there is a missing drop kerb? We went to a shop the other day, the disabled bays outside were full so we had to park in the regular car park. There was no drop kerb so I had to drive along the busy road to a zebra crossing before I could mount the pavement.

We bought a National Trust membership this year, which is great, I’ve a long list of places to visit. But National Trust properties don’t have lifts so I’ll never be able to see upstairs. Also, I can’t take my powered wheelchair into the properties at all, so I only get to see as much as I can walk with my sticks, which is usually not a lot. If it’s a nice day I can get around most of the gardens, until you come to steps. And most gardens have steps.

Yes, I’m feeling sorry for myself today. I have been all weekend. I hate that this has happened to me. It doesn’t make me feel any better thinking that there are people worse off than me. In fact I feel even worse because I feel so bad for them too.

I’m lucky that I have my lovely, understanding family. But, I don’t want their lives restricted just because mine is.

My hopes of a fun filled, memory making summer are slowly drifting away.

But it’s not over yet, I need to fight this, I need to turn it around and make things even better. Stop feeling sorry for myself and let my kids enjoy the experiences even if I can’t join in.

Just not today.

Dark blue image of man and the sea and the text, Today I'm feeling Blue

Mummy Times Two

Facing Demons

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The New Year is a difficult time for me, I think my last post shows that. Not only is it the anniversary of my Transverse Myelitis attack that has changed my life, but it’s also the anniversary of my Mum’s birthday after she passed away on Christmas Day eight years ago. Then today is the 8th anniversary of my brother’s suicide. Also, if that’s not enough, last year, just before my attack my Father-in-law passed away while I was taking him to hospital for a check up. I still have nightmares about that day.

Then there is the nightmare that happened sixteen years ago on New Years Day. The thing I can’t talk about, the thing that affects every member of our family almost every single day, even now. One person with a cruel and unnatural mind, crashing in on another’s vulnerable mind and causing so, so much damage.

So, it’s no wonder that this is such a difficult time of year for me. I find it all so difficult to share too, which doesn’t make things easier. Maybe, it’s time I tried.

I’m facing my demons head on, the things that break me, the things that make me fall, that bring that big black dog to my door.

How, I’m not sure yet, but for far too long I’ve just kept on going, kept on being positive, trying to progress and really not getting anywhere at all.

Life can be cruel and for me I feel it started when I was eight years old and has just kept on being cruel. So many awful memories, so many sad times, so much grief and pain, so much betrayal.

I look for the positives, I keep my glass half full, I count my blessings, but the darkness keeps returning. Now I know what I have to do to, I’m just not sure how I’m going to do it.

Positive thoughts alone will only help to turn your life around, to complete the turn around you have to face your demons first.


I keep thinking ‘why me?,’ Am I such a horrible person that I attract all these bad things. What did I do? Where did I go wrong? Could I have done something better, could I have been a better person?

I blame myself, then the demons rush in, there is nothing like a little self doubt to get them rushing by and pulling up a chair to make themselves comfortable in your mind. In my mind. I am the demon, I am the one that causes all the bad things. It’s all my fault.

I know, deep deep down that none of that is true.

My life has been so good at times and I’ve been lucky to have wonderful friends and family. People who I trust and love. I have been blessed with five children. Three of them later in life when I thought my childbearing days where done.

I will keep on feeling positive and counting my blessings and pushing those demons out the back door. I will keep on smiling and making jokes (that no-one ever gets) and playing with my kids filling their lives with laughter and smiles.

I will also face those demons and the darkness. I will come to terms with them and this time the door will get locked firmly and they won’t come back.


I face my demons and embrace my fate.