Weʼre raising £300 to provide support while I’m on long term sickness, and awaiting a decision regarding ‘Personal Independence Payments’ from the government
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I am currently on my 2nd long term sickness from work with a whole list of chronic health conditions. I have applied for help from the government in the form of ‘Personal Independence Payments’ back in December 2018 but this takes ages to get a decision. Despite being on a pharmacy of medications, we still don't have the balance right to allow me to live a ‘normal’ life. I am soon to drop down to half pay which is a scary thought...
My main aim is just to get my symptoms under control and back to work!
I am using crutches to move around but I am still exploring the idea of a wheelchair for longer distances due to the fatigue and joint pain I am suffering. I am hoping Occupational Therapy can help me with this, but if not I will have to consider purchasing it my self.
I'm currently saving up to move to a more accessible house as I live in an upstairs flat which is not ideal with my reduced mobility. We also don't have central heating making my Raynaud's more problematic. Although there are grants available once we've moved to make the house more accessible I need to do the saving my self first to get a mortgage.
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Behcet's Disease (Apr 2008)
- a rare and poorly understood condition that results in inflammation of the blood vessels and tissues. Most people with the condition experience episodes where their symptoms are severe (flare-ups or relapses), followed by periods where the symptoms disappear (remission). Symptoms include: Ulcers, Headaches, Painful/Stiff Joints, Sensitive Skin, Abdominal Pain, Loss of Balance.
Chronic Fatigue Syndrome (Apr 2008)
- long-term illness with a wide range of symptoms. Most people with CFS get better over time, although some people don't make a full recovery. It's also likely there will be periods when your symptoms get better or worse. Symptoms include: Extreme Tiredness, Muscle/Joint Pain, Heart Palpitations, Headaches, Problems Thinking/Remembering/Concentrating, Dizziness.
Short Term Memory Issues (May 2008)
Hyper-mobility (Oct 2012)
- a rare inherited condition that affect connective tissue. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Symptoms include: Joint Hypermobility , Loose/Unstable Joints that Dislocate Easily , Painful/Clicking Joints , Fatigue, Skin that Bruises Easily.
Hip Dysplasia (Sept 2017)
- a condition where the "ball and socket" joint of the hip does not properly form. The hip joint attaches the thigh bone (femur) to the pelvis. The top of the femur (femoral head) is rounded, like a ball, and sits inside the cup-shaped hip socket. The socket of the hip is too shallow and the femoral head is not held tightly in place, so the hip joint is loose. In severe cases, the femur can come out of the socket (dislocate).
?Inflamatory Bowel Disease / ?Crohn's Disease (Jan 2018)
- [Currently under Investigation]
Raynaud's Disease (May 2018)
- a condition that affects the blood vessels in the body's extremities. Symptoms include: Pain , Numbness , Pins and Needles , Difficulty Moving the Affected Area.
Hyperhidrosis (May 2018)
Chronic Migraine (Jan 2019)
- a distinct and relatively recently defined sub-type of Chronic Daily Headache. The International Headache Society defines chronic migraine as more than fifteen headache days per month over a three month period of which more than eight are migrainous. Due to the nature and length of time that the sufferer is affected, people with chronic migraine experience significantly more time absent from work, school, leisure, housework and social activities than episodic migraine patients. Efficiency is also reduced due to chronic migraine, resulting in a more than 50% reduction in productivity from work or school. The impact of chronic migraine can be very disabling. Being incapacitated for over half the month sometimes means that people are unable to work at all, with some claiming disability living allowance. Unfortunately, in many cases, current therapies are not enough to prevent or reduce the impact that chronic migraine has on people’s lives. The World Health Organisation (WHO) has recognised the impact of migraine worldwide and categorised it as the same level of disability as dementia, quadriplegia and acute psychosis. Furthermore WHO classified chronic migraine as more disabling than blindness, paraplegia angina or rheumatoid arthritis.
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About the fundraiser
I am a fully qualified Paediatric Nurse but unfortunately I am struggling to look after myself at the moment let alone other people. A few years ago I had to take a step back from hands on nursing care and now I'm having to re-assess my life again... being sick sucks!!