monday musings

Don’t Look Forward, Look Back!

Don’t look forward, look back. Now, that is not my normal advice. For every step of life you shouldn’t dwell on the past but on the future. Keep on striving for what you want, there is always room for improvement and you have to make the best of your time on this planet.

In my own case, why should I look back on the past where I could walk and do so many things I can no longer do. I should look forward, think of how I can heal, think of how I can be better again.

But in this case I’m looking back, simply as a time scale. You see, at the moment I feel like I’m stuck in a 70 year old body, the pain, the immobility, the inability to live a normal life. I’m not 70 though, I have 18 years to go until I am 70. But 18 years doesn’t sound a lot does it, it will pass in a flash and if I even make it that long I’m going to be feeling 70 for a very long time. I look at friends and peers and think that they don’t look so aged as me, they are still enjoying life to the full, still working, still having fabulous holidays, still doing all the things they did before and even more because their kids are all grown up (or growing up quickly.)

So, I’m looking back.
Let me see, 18 years ago I was a single parent of two youngish children. I was working full time and juggling everything a single mum does. I was trying to date, whenever I could get a babysitter that was. Then my world exploded, exactly 18 years ago, and I almost lost everything including my sanity. I did lose my job and almost lost my home, I certainly lost my family apart from my two children and one of my brothers. It was a very low time for me indeed.

Then over the next two years I began to build things up again, I met my current husband, we started enjoying life again. I went on to have three more wonderful children and we moved from a very crowded small house to the lovely big house we have now. We built up to a stable and happy family life. Yes, we had our ups and downs but doesn’t everyone? 18 years ago I was rock bottom, but now it seems like a lifetime ago.

It only took me two years to get out of that awful place I was in 18 years ago. If I can improve my health and my life in the next two years then I will have plenty of time to carry on enjoying my life before I become a 70 year old in a 70 year old’s body. In fact, there are many of 70 year old’s and even older having a good life.

I’m going to fight this, I’m going to fight for a better life.
I know what I have to do and I’m going for it.
I’m not waiting for my miracle to happen, I’m going to make it happen.

I’m looking back because 18 years ago life was shit and I made it so much better.
I’m looking forward because I can feel 70 in 18 years, I’m not going to give in to feeling it now.

Why I Choose to be Positive

by Anne Sweet 17 Comments

People often ask me why I’m so positive. Well, I do have my down moments, times when I feel I can’t cope anymore. But it’s my positive attitude that pulls me through, and it’s always there, deep inside, even when I feel depressed.

positive: a field of dandelions with the text, when you look at a field of dandelions you can either see hundreds of weeds or a thousand wishes.

I’ve always been pretty laid back, I let life’s problems flow and deal with them when I can. Sometimes I procrastinate (okay, I procrastinate a lot) and this doesn’t help, but eventually I get everything sorted and back on track.

I always say that I had a good childhood, and I really believe it. But, how good could it have been really when my Dad died while I was young and mum had to bring up me and my brother in a time when one parent families were a distinct minority.

I always say that my first marriage was good, but it wasn’t really. despite the happy times and the births of my first two children, there was a lot of misery. When he finally left for good I didn’t cry, I’d done that too many times before when he’d left me. The last time I just felt relieved. We are still friends because I don’t hold grudges and he’s my kid’s Dad.

I don’t hold grudges you see. It’s not easy, but I forgive people that have hurt me and don’t dwell on it. I never used to, and it made me miserable. Forgiveness is like a magic potion for healing. I know some people find it hard and really can’t forgive those that hurt them. But you don’t even have to tell them you forgive them, just hold it in your heart, forgive them and the pain eases. You don’t have to worry or stress about them and what they’ve done, it’s over.

I don’t believe in karma. I think it holds you back, it’s kind of like revenge. If someone hurts you and you think that karma will get them, then it’s like saying you wish something bad to happen to them. Then there is good karma, where you think that those who have awful things happen to them will get their good things by karma. It just doesn’t happen and it’s not worth waiting for. I don’t believe in karma because I’ve seen too many bad things happen to good people and too many good things happen to bad people.

I never say ‘why me’ because it just makes you feel miserable. I know that bad things happen to people all the time, this time it’s my turn. Maybe I’ve had more than my fair share of bad things happen, but if I think why me, then I have to believe that I deserved them in some way.

Positive

So, why am I so positive despite everything. Well, I deal with my problems as they arrive, I may procrastinate but I do deal with everything eventually. I don’t dwell on the bad things that have happened and I don’t blame anyone, not even karma or myself. I forgive those that hurt me and don’t hold grudges. And I am determined not to let my old age be full of regrets or bad feelings, life is short and you have to make the most of the happy times and hold them close in your heart.

I would never look at a field of dandelions and think of them as a hundred weeds. For me they are wishes, little happy moments that are so much more special than the bad things.

You may like my other post ‘Ways to Keep Positive’

How do you stay positive?

If You Fell Down Yesterday, Stand Up Today.

by Anne Sweet 11 Comments

photo courtesy of Les Anderson

If you read my post last week, Let Me Not Beg for the Stilling of my Pain, then you would have probably noticed that I was not as upbeat as I usually am. I try my hardest to be positive but sometimes, even while trying, I feel pretty bad inside.

I was really ill, I’d been ill for weeks and I really thought it was time to just give up. But giving up is not really in my vocabulary.

Last week I spent every day in hospital as an outpatient. I received my IVIG treatment for the third time. The first time I’d had very little result, the second time I’d had some good signs but the side effects nearly killed me. This time I was scared about the side effects and had little faith in the treatment. I also harbour guilt for taking such an expensive medication when it was not doing me any good, but talking to other patients they all said I needed to keep going as it does get better.

So, last Monday I had fallen. I had fallen hard and didn’t have much hope in getting back up again.

But, I did. I had my treatment, I have had very minimal side effects, and I feel much better!

Okay, it’s not been a miracle cure, but I have less pain (I have to say that again, I have less pain!!) and I have a little more energy. I feel better inside and my positivity has returned. I’m standing up again. (Almost literally but only for short periods,) and it feels good. I have already been booked in for my next two treatments but I will see my consultant before then. Depending on how long I feel better for he may change my treatment dates.

I have a lot to look forward to this year, and although it started pretty rough, I now have lots of hope that things are going to be just fine.

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

by Anne Sweet 13 Comments

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

Happy New Year!

by Anne Sweet 8 Comments

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

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