Shake, rattle and roll!!!!

Shake,  Rattle and Roll!

I really don't like to moan about my aches and pains and try not to bother anyone with my tales of pain and fatigue........  but there are days when I just feel like I am not sure I can do this for the rest of my life!  I am now taking so many pills that I feel as though you could hear me coming from a mile away as I "shake, rattle and roll!" down the pathways.

I am sure that I am not taking as many pills as some other people, but for me this is a lot!  I have been sick my whole life and so should be used to taking medication by now (after 44 years!)  but I still find it hard to swallow pills and feel quite ill after taking even pain killers.

To top it all off, I have just changed GP's as we moved a year ago (and only just got the courage to change GP's) and the new senior doctor is questioning why I am taking certain meds.  Here is what I am taking every day:

am :  
1 x Fexafendine :  urticaria and hay fever
1 x sertraline : depression
1 x hydroxichloroquinne :  trial for arthritis pain
2 x co-cododamol : (4 hourly) in advance to cope with the daily pain of arthritis
1 x Limecycline : to keep my rosacea at bay
2 x puffs seretide : asthma steroid
2 x puffs salbutamol : asthma reliever

pm:
1 x montelukast :  to help me sleep through the night without waking up wheezing
1 x hydroxichloroquinne :  trial for arthritis pain
2 x co-cododamol : to help me sleep through the pain at night


I am wrapping my fingers in coflex now to protect them from bumps and also the strapping is helping with the pain.  I have also been given a brace for my ring finger as my finger is bending at quite a bad angle now so the hand therapist is trying to straighten out my bone (which is extremely painful and I cannot wear it for too long).

These bulges are called Heberden's Nodes and are extremely painful and not very pretty to look at either.

What is a hebeden's node?



I have also been given a super sexy support for my hand and to support my left thumb as the pain is quite bad and I am starting to lose my grip on things so am finding that I am dropping things on a regular basis.  I am so grateful to my family as they are always carrying things for me and helping with so many different things around the house, shopping etc.  

To my hubby, he would carry me around if I needed him to (and may need to later on in my life),  he has unlimited patience with me when I have my down days and become the wicked witch of the west!  I could not cope without him.

To my daughter Steph,  she always asks with interest how I am doing and does everything in her power to help me with anything I need,  she has a little one and as a single mom her time is very precious,  so the time I am priveleged to have with her is very special.

To my son Garry who is always on hand to carry my shopping and lift things for me around the house and does it with a smile on his face even when he has a football injury of his own.  I am so grateful that he is around when I need him.  I am grateful to him listening to my moans too when I have a bad day.

To my grand-chicken Addison who lights up my life with his smile and energy.  I am so glad that I can still do some things with him like dancing and painting etc,  I need to enjoy this while I can.

To my little sister Sarah,  who lives further away but obviously thinks of me a lot.  Constantly sending me messages to see how I am feeling.  I am grateful for everything we have been through together in the last 10 years that have brought us so much closer together and understand the extent of her love for me because of it all.

so nearly time for bed and some pills to take...........  At least I get a full nights sleep because of the tablets I take at night for which I am really grateful as it is a lot easier to face the next day of pain when you body has rested the night before.

Accepting my limits!

The "young me" was active, sporty, energetic, creative, musical, sociable, insecure, negative, independent............  The "old me" (the one with arthritis) is slow, tired, aching, throbbing, clumsy, forgetful, dependent on others, positive, mature..........

Sometimes is it is really hard to accept that I won't be able to to do the things I used to be able to do.  I still find myself getting frustrated that I cannot clean the house in one go,  that I have to take breaks on a regular basis, that I cannot walk as much as I want to.  But I understand that this is who I am now.  I found a great article on the "Not to do list" (see below and it really made a whole lot of sense to me).

A Not-To-Do List for the Chronically Ill

Items that belong on a not-to-do list for those with chronic pain or illness.

Published on August 2, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

Pierre Bonnard (1906)

I love To-Do lists. I depended on them when I was working outside the home. I’ve depended them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.
A few weeks ago, I realized I could benefit from a Not-To-Do list that would remind me of my limitations—limitations I often ignore either because I’m in denial or because I want to please others. Unfortunately, I always pay the price physically, and that’s not good for me mentally either.
So here’s a Not-To-Do list for those who live day-to-day withchronic pain or illness (or, as is often the case, both).

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1. DO NOT say “yes” to an activity if your body is saying “no.”
I’ve ignored this Not-To-Do so many times that I’ve lost count. It can be so hard to turn down an activity that makes me feel more like a healthy person. When I break this rule, it’s as if I’m a child again, shouting at myparents: “Look at me! I can ride a bike with one hand!”
My most recent “bout” with ignoring my body began innocently enough about a year ago. Two friends were kind enough to coach me in learning Qigong. I learned movements with wonderful names, such as “Against River Push Boat” and “Huge Dragon Enters Sea.” Then came “Ancient Tree Coils Root.” You imagine that you’re a strong tree, sending roots down into the ground. Unfortunately (for me), you execute this by pointing the tips of your fingers toward the ground, putting your weight all on one leg, and then squatting down on the knee of that leg.
For the first few months, I ignored the “one leg” instruction. I stood on two legs and only squatted down partway. I was listening to my body. But one day, I decided I wasn’t progressing fast enough, so I picked up one leg and went all the way down on the other. My knee went “crunch” and, for several months afterwards, I was limping and had knee pain to add to my daily symptoms. Why did I ignore my body? I was frustrated by my limitations and so I rebelled. Lesson learned though: DO NOT say “yes” to an activity if your body is saying “no.”
2. DO NOT call yourself names or otherwise speak unkindly to yourself.
Here’s an anecdote from my book How to Be Sick:

At a retreat in the 1990s, teacher Mary Orr told this story:
She was in the middle of a harried day in which she had too much to do and too little time in which to do it. At one point, while in her car, she realized she was talking to herself in a way she would never talk to others. I don’t remember her exact words, but I remember their impact. They resonated with me because of their similarity to the way I often talked to myself:
“How stupid of me to take this route; it’s always full of traffic.”
“I’m so dumb, I forgot to bring my notebook.”
“You clumsy idiot—you dropped your drink again.”

Mary’s story was a wake-up call for me. I’d never call a friend “dumb” or “stupid” or an “idiot.” But I’d called myself those names. The Buddha said: “If you search the whole world over, you will find no one dearer than yourself.” I decided to take his words to heart and so I began to treat myself as if I were a dear friend. The result? I felt so much better, as if I’d shed a tremendous burden—the burden of self-judgment.
A good test for whether you’re treating yourself kindly is to ask if you would speak or act that way toward a loved one in need. If not, don’t speak or act that way toward yourself. It’s hard enough being sick and in pain. There’s never a good reason to add negative self-talk into the mix.
3. DO NOT try a treatment just because someone said it cured him or her.
I have a theory about many unconventional treatments. Depending on a person’s condition, it’s possible to spontaneously recover from an ongoing illness. Some people do. When that happens, they attribute their recovery to whatever treatment they happened to be undergoing at the time, no matter how unconventional it was. The reason I think my theory is credible is that I suspect I’d do the same thing were I to wake up not sick tomorrow morning.
So don’t assume that any seemingly magic cure is for you. Do your research, consult with those whom you trust, consider your pocketbook. I like to check my tendency to jump at treatments (I get emails almost every day telling me to try this or try that), by reflecting on how, if this really were a cure for my dysfunctional immune system, it’s highly likely it would be all over the internet on sites I’ve come to trust.
4. DO NOT wait until the last minute to get ready for something.
Waiting too long is an invitation for a surge in adrenaline to get you through. If you’re like me, that draining sensation of “coming down” off adrenaline is the first sign of a crash. When getting ready (showering and dressing for an appointment, picking up the house for visitors) try doubling the amount of time you think it will take.
5. DO NOT strive for a spotless living environment.
Corollary: DO NOT feel bad or criticize yourself for not striving for spotlessness. That would be engaging in unkind self-talk and it’s already on your Not-To-Do list.
6. DO NOT “shop ‘til you drop.”
That’s for healthy people.
7. DO NOT wear uncomfortable clothes.
Your body is already struggling. Don’t subject it to restrictive panty hose, tight jeans, high heels (of if you’re a man, whatever the male equivalent would be). Exception: If there’s a special occasion that will give you a mental lift if you break this rule, break it. But remember your reasons for breaking it, so that you don’t slip into negative self-judgment if those too-tight clothes start to chafe or those fancy-looking shoes begin to hurt.
8. DO NOT think about pleasures from your pre-illness life, freeze them in time, and assume they’d be as much fun today.
Even if you aren’t sick or in pain, life is in constant flux. Among the healthy, relationships change, job conditions change, bodies change. I’m going to write about this soon in a piece I’ve tentatively titled, “Do You Suffer from ‘Good Old Days Syndrome’?”
What would you put on your Not-To-Do list? I’m looking for more items to put on mine, so please share your thoughts with us.
© 2013 Toni Bernhard www.tonibernhard.com  
Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow  .
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers  

Physio-terrorist!!!!!!!!!

So today I had my first physio therapy session with my physio Andre.  He sang to me "me and Mrs Jones"! and then got down to the business of my physiotherapy.  he said to me that there is a hard road ahead as my muscles are very weak and need a lot of strengthening.  I need to strengthen the muscles around my knee cap and also the muscles in my hips are very weak.  i am going to have to commit to doing these exercises every day, to push through the pain,  he has suggested i take my pain killers regularly (4 hourly) instead of when I need them.  This will give me the strength to do the exercises.

I also have another hand therapy appointment and now am the proud owner of a sexy finger brace to try and straighten out my deformed fingers.  She is going to make me a brace for my thumb and wrist to support my hands.

I am finding that my emotional state is getting worse.  I am feeling so bogged down by everything I need to do and all the tablets I need to take.  I am starting to get a little worried about my depression and may need to see the doctor soon.

sorry to be so negative today,  it has been a long day of hospital appointments and I just needed to put it down in writing so I can make some sense of it all.
xx

No arms, no legs, no worries!!!!!!

Feeling Down?

I have had so many doctors appointments, hand therapy appointments, physio appointments, orthotics appointments in the last couple of weeks that I seem to becoming so focused on being sick and what I can't do and have lost sight of what I do have and what I can do!  

I work at a RC Boys school and this week we have had Wider Horizons week which is like an enrichment week doing activities like Outdoor Activity Centres and Extreme Sports. I have really enjoyed my time out of school and was quite disappointed this morning  when I was told I am actually staying in school and someone else was going out to the Skiing in Hemel Hempstead.  Little did I know that the universe had a plan for me to be in Mr G's (Josh) Fix Up motivational class.

This man is incredible, the boys that are known to be problem lads were fully engaged in what he was saying and to be honest he had me fully attentive and lapping up all his positivity.  I am naturally negative but am fully aware of this and make a huge effort to be positive in my thinking and actions.  I noticed today that I have become so focused on all the things I can no longer do since my osteo-arthritis has been confirmed that I have lost sight of all the things I am able to do. 

this video was truly inspirational and I have to share it with all of you as there should be no excuse for anything.  If we can dream it, we can do it!

I am inspired to believe in myself and what I still have to achieve in life.  I am inspired to listen to my body and rest when I need to rest.  I am inspired to not see this as a negative but as a positive.  I am INSPIRED!!!!!!!

No arms, no legs, no worries!

The next step....

I have finally been referred to see a Rheumatologist.  I am not sure what the next step is though.  My appointment is on Monday 29th April.  My arthritis has different levels of pain on an hourly basis, even typing this blog makes my fingers ache with pain.  I guess that I am also concerned about what kind of an impact this arthritis is going to have on me long term. Work, driving, housework, grandmother..... I am already finding daily tasks difficult, drying my hair is a nightmare,  housework is almost impossible without a regular break every 10 minutes.    I currently have arthritis in the following places on my body :

1. Neck
2. Back
3. Hands (both)
4. fingers
5. Left knee

so why is there pain in my arms, legs and wrist?

I hope that I can get some clarity on what this means for me..... I really feel "Old before my time".....

10 things not to say to someone that has arthritis.....

10 Things Not to Say to Someone With Arthritis

Think Before You Speak

By Carol Eustice, About.com Guide

Updated February 18, 2013

About.com Health's Disease and Condition content is reviewed by the Medical Review Board

People with arthritis are not inherently hypersensitive but certain comments from friends, family, or even strangers, can hurt. Even though the comments are not intended to be hurtful, they can provoke negative feelings, as well as a sense that no one understands what it is really like to live with arthritis. Here are 10 comments that you should avoid when talking to someone with arthritis and why the comment, even when said innocently, stirs bad feelings.

1 - I know exactly how you feel.
It is not possible to know exactly how someone with arthritis feels because you have not experienced what they are feeling. The comment is often said to express that you can relate to what they are dealing with, but truthfully, it comes across as minimizing their pain or other physical challenges. It would be better to say, "I haven't walked in your shoes. I can only imagine how difficult it has been for you."

2 - You look just fine.
In usual circumstances, people like to be told they look well. But, when you are speaking to someone who has arthritis, someone who feels sick and tired of feeling sick and tired, the comment is unappreciated. The comment implies that they must feel fine because they look fine. In other words, you look good, so how bad could it be? The comment disregards the fact that certain symptoms are invisible, but still very real. Pain is not always visible, unless associated with a limp or other physical abnormality. Fatigue is not visible. Malaise is not visible. So much of arthritis is not visible. It would be better to say, "You look good but I know that is no indication of how you are really feeling."

3 - You're too young to have arthritis.
This comment is derived from the biggest misconception there is about arthritis. Most people think that arthritis only affects older people and that the disease is associated with aging. Fact is, anyone can develop arthritis. There are about 300,000 children in the U.S. who have been diagnosed with arthritis. While the comment is not necessarily hurtful, it is annoying to hear the myth and misconception perpetuated. A more appropriate version of the comment might be, "It is so unfair for someone your age to be saddled with arthritis pain."

4 - I heard this product works to cure arthritis.
There is a vast audience paying attention to advertisers and marketers. Those who promote supplements, special juices, topical rubs and more as the cure for arthritis can be accused of deceptive advertising -- for most people with arthritis there is no cure. When you listen to infomercials or get drawn into magazine ads or tabloid headlines, you are hopeful that you found something that could help. In reality, unsolicited advice is not welcome. Any treatment that has merit will not be announced on an infomercial or tabloid headline. Temper your enthusiasm and keep a lid on unsolicited advice.

5 - If you changed your diet, you would feel better.
This comment is wrong on many levels. It implies that there is a known connection between diet and arthritis. There is no proven causal connection between diet and arthritis. It also implies that the person with arthritis is uneducated or uninformed for not knowing a better, more healthy way to eat. A better approach, if you feel compelled to discuss diet with someone who has arthritis would be, "Have you ever tried eating anti-inflammatory foods. Perhaps it would be worth a try."

6 - You should walk more.
Again, this falls under the category of unsolicited advice. The comment also has an undertone that suggests the person with arthritis is lazy. Walking actually is a recommended form of exercise for all people. Many people with arthritis have mobility issues and physically cannot walk far, though. If you want to bring up walking in a positive way, you could say, "I know walking is difficult for you. I'll go with you if you would like company. We'll start slow and go only as far as you want to go."

7 - You take too many medications.
Medications can be a touchy issue. No one really likes to take prescribed medications, but most people with arthritis find it necessary. Many people with arthritis would tell you that they could not function without their medications. Their medication regimen is decided upon by their doctor. It is inappropriate for you to discuss medications unless you feel they are abusing a prescription. If you are just trying to pitch natural alternatives versus prescription medications, it's best to leave treatment decisions to the doctor and patient.

8 - My knee hurts sometimes too.
It's quite possible that your knee hurts sometimes. But you can't compare minor aches and pains to someone who has severe arthritis. Pain cannot be compared. It is not a competition. This comment is just another way of saying that you know how they feel. In fact, you don't. It would be best to be a good listener and not interject your own aches and pains into the conversation.

9 - Do you feel better yet?
No one wishes they could stop chronic pain   more than the person who lives with arthritis. It's their goal to try and find whatever will make them feel better and function as normally as possible. A comment which asks if they "feel better yet" sounds impatient. It implies that they aren't trying hard enough to get well or that there is some timetable involved. It suggests that there is a definitive end as opposed to recognizing arthritis as a disease that for most people lasts a lifetime. It would be preferred and likely better received to simply ask, "How are you feeling?"

10 - It's one thing after another.
It is the nature of the beast. As soon as one joint is under control, another flares up. People with arthritis know about multiple joint involvement, systemic effects of certain types of arthritis, medication side effects, and disease complications. It actually does seem like one thing after another at times. But, you don't need to point out the obvious. They live it. A more appropriate comment might be, "I'm sorry you have to deal with so much. I wish you could have a break from the pain."

motivations

Daily pain.........

So this is a blog but also an Arthritis diary so that I can start to measure my pain on a day to day basis.  I am pretty sure that what I am going through is not unique and I need to find a way to get some help as all the doctors keep saying that there is nothing they can do to help me.  Surely that is not true!!!!!  anyway this is going to be a record of a journey to managing my arthritis pain and discovering more about the illness that is  the thorn in my side!  

these are the websites that I have looked at today in a start to getting on the right track.  i did an online assessment only to be told at the end of it that i should get to A&E asap!

NHS Direct  

Arthritis Care

pain score today :   1(good) 10(bad)

back:  8
knee: 8
hands : 7