Thursday, 18 August 2016

Aids to help with Fibromyalgia Edition 1




For me, one of the hardest aspects of fibromyalgia is the changes to my independence. I was not prepared for any changes to this aspect of my life. 

The last twelve months have possibly been my illest so far. I am unsure why there has been such a rapid decline in my health and pain so this I can not share.

With my change in independence I had two options:
  1. I could sit and wallow at the things I can no longer do.
  2. I could look into what aids were available to try and assist my independence. 
I fully understand that this will be easier for me to do as it is not an alien subject to me. I have worked within a multidisciplinary team during my nurse training days and also as a therapist. I am fully equipped to look at lifestyle, illness and formulate an individual holistic care plans based upon this. I always base my plan on the Activities of Daily Living. (ADL's)

Back in 1996, Nancy Roper, Winnifred Logan, and Alison Tierney came up with a theory which attempts to define what living means. It categorises the discoveries into activities of living through complete assessment, which leads to interventions that support independence in areas that may be difficult for the patient to address alone. The goal is to promote maximum independence for the patient. 

When a person receives a diagnosis of Fibromyalgia within the United Kingdom it is usually obtained by a referral  to a consultant Rheumatologist who then conducts a series of elimination examinations. They are then discharged back to the care of the family doctor with a letter diagnosing Fibromyalgia. 

Initially, a few things are offered such as counseling, pain clinic, physiotherapy. Then many people are simply left with a prescription and a name for why they feel so unwell. This does not happen in every case but I know of far too many people and this saddens me.

At this early stage, I feel an assessment should be made regarding their level of independence/dependency and it should be monitored at various time spans to assess any changes.

Over a time span, our health may decline or may alter in different aspects. Some people are not aware of this as we are always told Fibromyalgia is not a progressive illness. Some do not know that there are many pathways of care to be referred on to. This should be standard practice to be told of this but sadly it is not.

One of these pathways of care is an Occupational Therapist. They can assess what you need and recommend different ways to do things to make it easier.

There are so many gadgets and aids I use to help my independence. I decided to share all these wonderful things with my readers in a hope that the list may make someone else's day a little easier.

You have to start viewing Fibromyalgia more holistically. Imagine you are an orange. Each segment is one area of your life, one aspect of daily living. Roper, Logan and Tierney decided there were twelve aspects. In order to become "whole" you can not simply focus on one area as it is only one segment.



At various stages of illness, we move along the dependence/independence continuum. Each day/week is different so when you have Fibromyalgia you can move from independence to dependence within a day when you have a flare.

Read here what a fibro flare feels like for me.

It is all about being prepared for this shift, balancing your day effectively and usings aids to independence when needed to make your day easier and happier.




Here are some of the things I use to support my independence with Fibromyalgia



Adjustable height table


Being in bed on your laptop, having a cup of tea or reading a magazine is so much easier with a table the correct height. No more turning to reach a mug on your bedside table as it in front of you. On painful days having everything at the correct height in bed is wonderful. 

This is not only an asset for bed but also in the living room. it fits under my comfortable chair and has my laptop and bits on. At meal times it is great for eating. Having a table with an adjustable height reduces the strain on your back and neck. Both great areas of pain with Fibromyalgia. 

Argos









Bed rail

Mornings are so stiff and we often need a crane to get us out of bed. This is a massive support to help pull yourself up. Just having something to hold on to is a massive confidence help when movement is painful. 




V Shaped pillow

These should be given out as standard at diagnosis of a chronic illness. They make sleeping and resting so much more comfortable. If you do not have one they are an asset. 




Heated blanket

I could not survive without this for pain relief. When I am in pain it is like having a massive hot water bottle to lay on. The power of heat therapy is amazing. You only need a single one as you do lay still in a trance on it. I can not recommend this enough for widespread body pain. I do not wait till bed time either, if I am in pain I lay on my bed feeling the soothing warmth.

Read: Heat blanket for painful legs






Hot water bottle

If you are a woman and you do not have one I am shocked you survive the period pain. If you are a woman with fibromyalgia and do not have one, please go and get one, this little plastic object is essential for pain relief. 



Bath Step

When your legs, hips, and back are all sore the bath can seem like such a massive climb. This is such a simple thing but will help so much. 




Bath/shower seat

One of the hardest things, once you are in a bath, is getting back out. Some days it is just nicer to sit on the seat and have a good wash. This is ideal if you are like me and have a shower over the bath. 


If you have a stand alone shower unit this is ideal to sit and have a shower as the legs are height adjustable and the chair is none slip. 




Bath wall grips

As mentioned above, getting out of a bath is so difficult when you are in pain. These are ideal as they are suction. 


Shopping trolley

Carrying shopping bags was one of the first alarms for me that something was wrong. I could always carry so many bags prior to fibromyalgia and suddenly I lost all strength and was exhausted. One of the first aids to independence was my shopping trolley. Mine was a polka dot one and we called her Bertha. This one is super trendy and I love the colours.

See my Bertha in this blog






Home Saftey alert

Falls are always a worry to me now my mobility is reduced. Recently I have had two falls, one in the garden and one on the stairs. Luckily I had someone with me on both occasions but what if I didn't?
It is always good to have a plan B. 



Non-slip tray

Having to carry things when your arms and shoulders are painful is difficult. It can result in spillage and scalds. This is a superb tray as it is non-slip.





Mobility Scooter

If you read my blog you will have heard me talk about Speedy, this is him. My mobility scooter is something I now could not live without. I have small children and so I still have to do the school run on my painful days. I could not live the life I have without the help of Speedy. 

Having a scooter makes balancing my energy better as after even short walks I am left in pain and exhausted.



Amazon
Mobility scooter £419.99




Walking stick

Painful legs, hips, and back combined with muscle spasms and weakness with Fibromyalgia all can leave you very unsteady on your feet. Walking with a stick or a crutch is a little bit of extra balance and confidence. 


Amazon
Arm crutch £28.39




Back brace support

Lower back pain is one of my most painful areas so I use this brace as extra support. It really does ease and support my back. I also use a heat patch and this in very painful winter months. 






Cooling patches

These are not only essential for Migraine but also for over heating with Fibromyalgia. Our temperatures fluctuate rapidly so when a flush is happening or you just feel uncomfortable and hot for no reason one of these is brilliant. 


I hope you enjoyed my first edition about Aids to help with Fibromyalgia. I have really enjoyed doing this blog as I shock myself how many aids I have that make my life with Fibromyalgia a little happier. I am happy to share them all but in doing so it would have been a massive blog so I will edit into editions.






Let me know if you use any that I do or if my blog was the little nudge you needed.

ಌ Love and gentle hugs to you all
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8 comments:

  1. This was so useful. I already have a few of the things here or am planning to get them. Living in a basement flat makes things difficult mobility scooter wise or I'd have a selection parked up outside in different colours! Thank you so much for sharing x

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    1. Hello Lady K, that must be so difficult when you know it would help you greatly but is so impossible. There is an elderly lady in my area that has a pink on and I have Scooter envy, my sons laugh when we see her as they know I love her scooter ha ha.
      Wishing you a beautiful Friday. It is raining here so we are in for the day but all the grass and plants are happy.
      Love Ness xx

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    2. Definitely needed the nudge on a few things. Thank you so much for taking the time to put the list together. Extremely helpful!

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    3. Kimberley, you are so welcome. Thank you for commenting, it really made me smile xxx

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  2. I love my hot water bottle. It's great for joint and muscle pain and also because I get cold easily.

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    1. Brittany, I am the same, always cold. I could not live with out my hot water bottle! Love and hugs xxxxx

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  3. My OT supplied a bed rail and I really didn't think it would be any good but 3 years later it's my most used aid. I'd never heard of them before.
    As for kool n soothes, I don't know where I would be without them. I often think they should be on prescription as they are the only thing that can take the edge off my severe headaches. Missy uses them for the same reason. Give me kool n soothes any day over morphine!

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    1. Thank you so much. So sorry for my late reply I have been so bogged down over the winter months I totally forgot about blog comments. Huge love and hugs Ness xxxx

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