In the Beginning

Two and a half years and a couple of weeks ago I woke up with pins and needles and ended up in hospital paralysed. It seemingly came from nowhere, but I now believe I did have hints that something was happening with my body.

After two weeks in hospital I came home with a zimmer frame and the promise that after six weeks physio therapy I would be fine. Nine months later when I saw my consultant next I turned up in a wheelchair, things were not fine.

I’d had an MRI in hospital which hadn’t told them much about what was wrong with me, so my consultant did blood tests, muscle tests and nerve tests and I ended up with a diagnosis of Stiff Person Syndrome, or a specific type of SPS known as Progressive Encephemyelitis with Rigidity and Myoclonus, or PERM.

So for the first year I was expecting to get well, but exactly a year after my hospital admission I found out that not only was I not going to recover, but my illness was progressive.

Year Two

I am still in  a wheelchair although I can walk for short periods with aids. I walk around my home but I always have something to hold on to. I don’t walk outside very often, I’ve tried sticks, a rollator (walker with wheels) and crutches. They all help with balance but nothing can stop the pain and fatigue. I get so far and my body just doesn’t want to move any further.

I take a cocktail of drugs every day, but the pain is always there, I may be able to dull it, but it never goes away. Sometimes my body freezes up into a complete spasm. Sometimes I can’t swallow properly, sometimes I can’t breath properly, it’s unrelenting.

Apart from the drugs I’ve had intravenous steroids which helped in the first instance, but did little to help after the second round. I have regular doses of Intravenous Immunoglobulins (IVIG) but it doesn’t help much. I get reduced spasms and it helps the myoclonus (jerking) but it’s not a miracle cure as I’d first hoped it would be.

Parts of my body are always stiff, parts are always in pain, parts always have pins and needles or neurological pain. It affects my sleep, it affect my life, each and every day.

I also have startle reflex, so a loud noise or something to make me jump, or even an intense emotion can make me go stiff, if I’m standing I may fall, if I’m sitting or lying, it just hurts.

I also have vertigo which can come at any time and last anything from minute to hours. This makes me feel like I’ve just downed a bottle of vodka, but not in a good way. Double vision, dizziness, loss of balance, the rotten stuff.

I could go on and on with symptoms but I don’t want to bore you.

Year Three

Yes, I’m half way through my third year, my youngest can’t even remember the times when I could walk. When I used to chase him around the school playground while waiting for my older girls to come out of school.

People get fed up of you when you are sick for  a long time.  At first it’s concern;

“How are you?”

“Are you feeling any better?”

“When’s your next hospital appointment?”

“How did you get on at hospital?”

Then they get bored;

“Are you not well yet?”

“I thought you’d be walking again by now.”

I’ve even been accused of moaning too much and not getting on enjoying my life.

I’ve even been accused of competing with others for attention.

Yes, people have had enough of me and my sickness.

Do they not think that it would be my greatest joy to announce that I’ve had a treatment that has worked, that my pain has gone and I can walk again? No, for some reason I’m just a miserable old cow because I haven’t gotten any better.

The Future

Despite what some people think of me I have always been a positive person and I’ve approached each treatment with excitement and determination. Yes, it does get me down when it doesn’t work, I don’t think there is anyone who wouldn’t feel the same. I do get into some very dark places sometimes when I can see is the pain and disability and the hurt I cause others. Sometimes I think my family would be better off without me.

Then I bounce back and fill my life with happy things. I start projects that I can get excited about, something to look forward too. Plans, future plans. Even if things don’t get better I can cope if they stay the same. If I get worse then I’ll deal with that too, one day at a time.

I am working with some other Stiff Person Syndrome sufferers to gain awareness for our condition and hopefully trigger more research into diagnosis, treatments and even cures. I am reading studies, finding out all I can and most importantly, learning from others who are living with it. It seems daunting the amount of research I am doing, but it gives me a purpose and hope.

I have also decided on what I want to ask my consultant when I next see him. I’ve found out that there is a drug out there that have helped people just like me to get back some life. I don’t know if he will approve it but I’m going to ask all the same. Also, I will give up the IVIG, yes, it helps me a little but I know it’s in short supply and others gain more from it than me.

If you’ve read this far, then thank you, I know there are people out there who genuinely care. Just as I know I will never give up hoping to get well again.

 

 

I’m a pill taker. I wish I wasn’t but if it wasn’t for my medication I wouldn’t be able to get through the day. There are ways of dealing with pain that do not require pills though. This is great news for me and my (almost) teen daughter. Star suffers a lot of pain thanks to her Elhers Danlos Syndrome and I would hate to think she will be taking pills all her life.

We both get joint pain, mine from arthritis and my daughter from her EDS, so I am always looking for ways of dealing with this pain that’s not reliant on pill taking. Well Wrap is introducing a wearable orthopaedic wrap that offers the perfect solution.

The Well Wrap is embedded with NASA LLLT lasers that treat musculoskeletal joint pain.

You can find out more about this technology in this video.

The embedded lasers in the Well Wrap provides stimulation to the ATP production which reduces inflammation and pain and accelerates recovery.

The Well Wrap will be launching later this year and you can get in first with a 40% discount by signing up on the Well Wrap Website here.

Who Can Use the Well Wrap?

The Well Wrap can provide relief for anyone with joint problems, from sport injuries to arthritis. It’s really simple to use, you put it on, turn it on, and then go about your day.

It also comes with a mobile app. that means you can keep on an eye on the vitals data such as blood pressure and temperature.

It can be used to relieve pain when it appears or for just 7 minutes twice a day you can prevent the pain. There is no chance of overdose and no side effects.

The first Well Wrap product will be for knee pain relief but it looks pretty good so I’m sure there will be more products to come in the future.

The Well Wrap is not released yet, but it has been reviewed by some users and you can see how they got on in the following video.

What do you think? Do you know anyone with joint pain? Maybe you would like to share this with them.

Remember, you can get in first with a fabulous 40% discount! if you sign up to the crowdfunding campaign.

 

Disclosure: This is a collaborative post

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 🙂

Lucy At Home

I have talked about migraines many times before on my blog because I have been a sufferer now for more than 30 years. The last two years have been better because as I have always suspected, they seem to be hormone related and my hormones have changed thanks to the menopause.

In the last two years though, I have had two quite terrifying attacks called hemiplegic migraines. I had one this week and ended up in hospital.

You have probably not heard of a hemiplegic migraine as they are extremely rare (jeez, I like to tot up the rare conditions don’t I?) A hemiplegic migraine causes paralysis, particularly in the face and they mimic strokes. When I had mine at the beginning of this week I was suffering all day, feeling like it was the worst migraine I’d ever had. Then Hubby went to pick the kids up from school and when he got back my left side of my face was completely numb and I couldn’t speak properly. He took me to hospital. I didn’t want to go, I felt to ill to go out, I just wanted to go to bed. The hospital gave me morphine for the pain but it didn’t even take the edge off. Fortunately the paralysis started to wear off and I was able to speak again. They wanted to give me Triptans but I refused. I know from many years of experience that Triptans only work for me if I take them at the very beginning of a migraine. I also know that they make me very ill despite shortening the life of my migraines. So I came home to sleep it off, and sleep is all I was capable of.

Luckily, it passed after two days which was pretty good.

The first hemiplegic migraine I had was back before I got sick. It happened during the night and I was alone. It affected my entire left side and I was unable to move out of bed or move my mouth to call for help. I just had to lie there in agony for what seemed like hours (I worked out it was around one and half hours before feeling came back.) My GP was arranging for me to have a CT scan to rule out that I’d had a TIA (mini stroke), but before the scan came around I was admitted to hospital with my current condition. I did have a full MRI so if I did have blood clots they would have picked them up. So, it was put on my notes that I’d had a hemiplegic migraine. And now I’ve had two.

I think I gave my husband his scariest Halloween ever!

The Reading Residence

Twin Mummy and Daddy

Last night while I lay awake in bed I was scared to go to sleep. Scared in case something went wrong, scared in case I didn’t wake up again. I’ve never been scared of dying but I do want to stick around long enough for my kids to grow up.

I can’t even explain why I was so scared. Maybe it was because Boo has a really bad dose of Chicken Pox. She’s really poorly, bless her, but I know she will recover and she’ll get lots of TLC while she’s ill. If she passes it to me I could get shingles.  I have an auto-immune condition and I’d find it hard to fight. I’m not keeping away from my little girl while she’s poorly though.

Maybe it was because I found some blood spots while getting ready for bed. Those horrible red spots that don’t disappear when you press a glass to them, the ones you look out for with dread when your child is poorly with a temperature and bad headache. I’ve just received plasma from other people’s blood, one of the side affects can be blood poisoning, or Septicaemia. For people like me it’s a high death rate if I get it.

Maybe it was because I’m waiting for some genetic blood test for Star, to find out exactly what’s wrong with her. I read the letter that went with the testing and found out what they were looking for. I googled it and I didn’t like what I found. I’m now praying that it comes back negative but I have such a long wait.

Maybe it was because my husband is ill with flue like symptoms and a rash, does he have shingles?

Maybe it was because I made a mistake with my finances and I’ve found myself short of what I need until next payday in two weeks.

Maybe it was the worry I have about my older kids, although I can’t talk about them here to protect their privacy, but I still worry about them.

Maybe it was because I realised that my treatment that I’d go so excited about hasn’t worked.
I wanted it to work so bad. I wanted to be free from pain, I wanted to be able to walk again. My dreams are dashed. I was okay about it at first, I thought that maybe the second round would be better, but I was told that unless I had significant improvements then there would be no more.

 When I got up this morning (I did manage to get some sleep in the end) I though I could face the world and get on with it. There were no more blood spots, Boo is still poorly but I’m looking after her, hubby is still poorly but his rash doesn’t look like chicken pox. I’m still a cripple and dealing with constant pain but what’s new! I’m still broke but just to add to that, Hubby has had his bank account hacked and he’s broke too.

Doom and Gloom!

Keep on Rolling, Keep on keeping on. It’s not the end of the World just yet. (We have to wait for Trump to press that red button yet!)

Debs Random Writings
Mummy Times Two