chronic illness

Keep on Hoping, Keep on Wishing but Most of all Keep on Believing

September 10, 2017 by Anne Sweet 13 Comments

Last week I went to A&E because I really thought there was something wrong with my heart. It felt like someone was sitting on my chest, crushing me and making it hard for me to breathe. I called my GP but I was told to go straight to A&E. I was given a red card on entry which meant I was seen straight away. They put me on a ECG monitor and checked me over. Then I was to wait to see a Doctor. As I was waiting over two hours I figured that they’d worked out that I was not having a heart attack.

I saw the Doctor and after lots of questions and further examination, and a consult with someone higher up the decision was that my pain was due to my condition, Stiff Person Syndrome. There was nothing they could do for me and I had to see my consultant for treatment. They couldn’t contact my consultant so that’s up to me, but I have an appointment in two weeks so I’m not sure they will see me any sooner.

For now I just have to deal with it an accept that this pain is yet another one I am going to have to get used to.

I also have been getting pain in my arms and hands, getting dressed has been really awkward. Again, I’ve been told it’s due to my SPS which is progressing. I was affected from my waist down, now it’s from my neck down. No, from my head down because I also get triginemal neuralgia which is another symptom of SPS and affects my face.

My first reaction to the news was to panic. I sobbed. I don’t want it to progress so soon, I knew it would eventually but it’s not even been two years yet. A lot of people with my condition (which is not a lot really because it’s so rare) have died within three years. The positive side to this news (for me anyway) was that they were not diagnosed in time and did not receive the right treatment. I’m extremely lucky to have been diagnosed so quick, and there are treatments available, so I’m still hopeful. What I am worried about it my consultants lack of concern, he didn’t even follow up to see how my last treatment (in June) went. I’m going to have to be firm with him when I see him next. I can no longer wait six months between appointments, if he’s too busy to fit me in then I will see someone else.

So after my self pity, (I really don’t want to lose my hands and arms, if my legs don’t want to get better I’ll deal with that but I can’t lose my upper limbs, I just can’t) I’ve decided that I’m going to bring out my fighting spirit. I’ve researched all the treatments that might work and I want to try them until I find one that does work. Of course, I would have to get the rarest form of an extremely rare condition, which means my consultant will have fight for the treatments, but I’m determined not to give in.

I also need to be pro-active. I have let my diet slip again and I do get lazy. Activity causes me pain, but if it’s the only way to keep my body doing what I want it to do then I need to be more active. I will walk more, I’m thinking of getting some of those comfortable crutches that support the arm so they don’t feel all the stress of holding me up. I have a friend who is great with alternative medication and although she’s been having a rough time this year with her own issues, I think she’s ready to start advising me again now. I am also in contact with other sufferers which helps a lot.

Sometimes I think that, you, my readers, get fed up of me harping on about my condition. But, this is my place and sometimes I just need to share. It makes me feel better, writing things down can be so cathartic and sharing my story may help someone else in the future. I know that reading another sufferers story as helped me, she’s into her 16th year and it’s been really rough for her, but now she has found the right treatment that works for her and is enjoying life again.

Just a couple of weeks ago my wish would have been to walk again. Now, that’s just a dream, a bonus. My wish now is that I can stop this condition from continuing it’s progression.

One thing is for sure, I won’t give up. I haven’t tried half the treatments that are available yet, and as much as I despise the thought of being on medication for the rest of my life, if it gives me more life then I will take it. I have children who need me. My husband needs me. And I don’t want them to be my carers I want to be the best I can and the only way to do that is to fight this illness and not let it get the better of me. It won’t win, I will!

Photo by crabtree on Unsplash

Photo by Alex Cagwin on Unsplash

Word of the Week – Blurry

August 18, 2017 by Anne Sweet 7 Comments

This week seems to have passed in a blur, you know, one of those weeks when you have no idea what day of the week it actually is. I didn’t even realise it was Friday this morning, so I’m writing this post last minute.

Monday we did the food shopping with the kids in tow. Not one of my brightest ideas I admit. I find shopping totally exhausting and the kids find it boring, so it was a recipe for disaster. However, I’d already done half the shopping online so we could skip several aisles and I had reward vouchers that I gave to the kids to spend.

So we set off to our local huge supermarket. The kids chose their gifts pretty quickly, and then we were off. I just wanted to select the fresh produce myself for a change, so our aim was fruit and veg, meat and fish and fresh bread. Of course the kids had to have cakes too. We didn’t do too badly, until I came to the checkout. I had a budget, seeing as I’d already done half the shopping online. I nearly died when the tiller asked for nearly twice as much as my budget!! I’m not going to the supermarket again!

My hubby Graham has been spending a couple of days this week helping my brother and sister-in-law with their house move so he’s not been around so much. The kids have spent more time on screens that I would like, but I’ve not had the energy to do much with them. I guess that’s why one day has blurred into another.

We did venture out again on Wednesday, to the clinic for Star. We watched a rather informative You Tube video called ‘The Poo In You,” go on, check it out if you have five minutes. Anyway, the bad news is that Star still has a big problem and we still have a program to stick to, which we are hoping will help.

That’s two days out this week, so Thursday left me exhausted and I also felt ill. The smallest illness can have the most drastic effect on my body and the kids have had colds this week so I guess they’ve passed the germs on to me. Yesterday I spent a lot of time in bed.

Last night was the worst I’ve had in a long time for spasms but thankfully I didn’t fall out of bed. I’m just glad that I finally got through to my consultants secretary this week and managed to get an earlier appointment. My appointment was in October, now it’s in September.

Also, this week, I’ve managed to spruce up my kitchen with some new items, including a new toaster which is much nicer than the last, and I’ve read a book. My week may seem a little tame in comparison with others but I think I’ve achieved a lot despite being ill. (More than usual) It’s the illness that’s blurred one day into the other.

Not Today, Today I’m Feeling Blue

August 14, 2017 by Anne Sweet Leave a Comment

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

Pending Doom!

June 12, 2017 by Anne Sweet 10 Comments

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!)

I Wish I Didn’t Hurt.

March 13, 2017 by Anne Sweet Leave a Comment

I wish I didn’t hurt.

When my Little Man gets into bed with me in the morning and wakes me up with a cuddle. It’s so sweet and I know it won’t last for much longer and I love it so much….but it hurts me, my broken body hates too much contact.

I wish I didn’t hurt.

When you all come home from school the first thing you do is come to give me a huge hug. I love it so much, it shows me how much you care and that you have missed me. I’ve missed you too. But it hurts me so much, I have to hide my pain, I try not to flinch.

I wish I didn’t hurt.

Then I could get on the floor with you and play your games with you. Or do those craft activities that take up too much room to do on the table. My broken body can no longer cope with kneeling or sitting on the floor, the pain is too much.

I wish I didn’t hurt.

I would so love to take you to school in the morning, it’s the thing I miss the most. I know sometimes it would be a nightmare of a rush and we’d even have some tantrums before getting out the door, but to drop you off and give you that one last kiss or hug goodbye was so special. I know, Little Man, you had the furthest to go and we would sometimes have to run together across the playground to get you in on time. I dream about running with you again, holding on to your hand. My broken body can’t even walk now, let alone run. I can’t even get out of the car by myself. I can’t take you to school.

I wish I didn’t hurt.

We used to do so much, go out so much. Play together in the park or in the garden. Do baking and crafting together all afternoon. Have friends around and do fun stuff. My broken body gets tired so quickly that I can’t keep up anymore. I can’t spend the hours I used to preparing activities and doing them with you.

I wish I didn’t hurt.

When I think I of all the things I can’t do anymore it hurts inside. My heart breaks because I can’t be the mum I used to be, I can’t be the mum I want to be. I love you all so much and I know you love me too. I hope you will still remember a happy, fun and joyful childhood and not one with a broken mummy who stopped being able to do things with you.

I wish I didn’t hurt.

Hurting sucks big time.

But I will keep fighting, keep fighting the pain, the hurting, the disability.

I will keep hoping that there will be a way to take away my pain, to make me better, to make me walk again.

I will do it for you, my children and my husband. I may be hurting but I am strong.