AUDIOBOOK: MANAGING FATIGUE AFTER A STEM CELL TRANSPLANT
Narrated by actor Andrew Hayden-Smith, our audiobook explains how fatigue is an expected side effect of stem cell transplant and includes practical tips and advice on how to deal with it.
This is the audiobook version of our popular booklet 'Managing Fatigue After a Stem Cell Transplant'. All our Anthony Nolan booklets are available free from www.anthonynolan.org/booklets
Full transcript (auto-generated)
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introduction
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Hello and welcome to Anthony Nolan managing fatigue after a stem cell transplant audio guide it's been produced with
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guidance and advice from healthcare professionals and are remarkable patients.
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You'll be in the same situation as you.
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This guide will help you understand your post-transplant and provide handy tips and advice that make it more manageable.
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This audiobook will explain what 40 guys some of the most common reasons why develops and how can affect both your
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physical and mental health.
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We also talked about how we can manage your energy levels including exercising regular.
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Sleeping well and getting support from your friends and family.
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The topic has been giving it an audio track so you can easily access the information is relevant to you when you need.
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We highlight some of the information resources that you might find relevant these guys are free to order from my website
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anthonynolan.org.
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If you need to ask us any questions or would like more advice. You can get in touch with the Anthony Nolan patient
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services team at patient info at anthonynolan.org or
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all three or 3
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attractive
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What is fatigue?
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feeling tired after work
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When you find difficult to concentrate and have no energy even after lots of rest and a good night's sleep.
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Take a Mick if you're both physically and mentally drained leaving you with very little motivation.
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It can be hard to concentrate even on simple things.
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There isn't a standard set of Rules that decides if you have fatigue or not.
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Everybody's recovery is different.
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And it will affect them in different ways.
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This is why it's important to keep your medical team well informed about how you feel.
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if you regularly
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Feel tired especially when you wake up.
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Have trouble sleeping during the night.
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I feel depressed.
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It could be a sign of fatigue.
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You might be felt like you had very little energy before you're transferred.
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The combination of your blood cancer a blood disorder and how was treated could have left you feeling constantly tired.
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He can develop at any time after transplant the most patients starting to feel fatigue during pre transplant conditioning.
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Usually happens when your blood counts are still no but as they say.
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energy levels will rise to
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You might also notice it when you go home and find you not able to do your normal day-to-day activities as he wants to.
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Play some people are short term effects of treatment that gets better over a few months.
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What am I coming over about 6 months to a year?
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How old is Mike recover many years after they transfer?
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women never completely gone
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This could mean that you need to make some permanent changes to your lifestyle, so it's easy to come to terms.
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stem cell transplant in 2014
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I think on balance, I will possibly always suffer from fatigue, but it's a very small but not insignificant face to pay to
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be back. Enjoy my life.
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It may be times in your recovery 140 is unavoidable, but it's still possible to manage your situation and make the best of
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the energy.
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This can be done through a combination of medication and practical tips.
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disgusting tracks 3 and 4
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What causes fatigue in what help?
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There are many possible causes of fatigue related to your transplant.
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your general health and wellbeing also facts
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Consent for older patients and those who had a lower level of fitness before they transplant.
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Your type of blood cancer or blood disorder and other health concerns could also affect fatigue.
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In this track we look at the main causes of transplant related fatigue.
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starting with the most
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We also suggest ways to make it easier to manage.
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You may not experience all of them during the recovery.
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conditioning
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For your stem cell transplant unit had a course of treatment known as conditioning therapy consisting of chemotherapy and
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possibly radiotherapy.
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Prepare your body for transplant by removing the cells of your immune system.
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Including those caused in your blood cancer a blood disorder.
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Is creating enough space in your bumper off your donors sells to rent Grafton stop making new cells?
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My fatigue setting on about day 5 of my week of conditioning with chemo I Began to feel like a different person. It wasn't
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so much tiredness. It felt like my energy has been taken from me.
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conditioning therapy
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Andy Steele while your new immune system develop
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During this time you have less red blood cells that normally transport oxygen around your body which is needed to release
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energy.
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Unfortunately conditioning therapy is essential pre-transplant step so it's difficult to avoid.
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This is why it's one of the main causes of fatigue after transplant.
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It often improves after a few weeks or months for some patients it can last long.
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Improving your general fitness prior to transplant has been shown to reduce the impact 40 can have post-transplant but
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unfortunately this isn't always possible for everyone.
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eating and drinking
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Whilst get back to your normal diet after your transplant.
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During the first few months to a year.
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Setting food my taste different to how they did before.
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Might not like the food.
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Chemotherapy damage the cells in the mucosal lining of your mouth.
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Swinton breakdown which can cause painful ulcers to form inside your mouth and throat
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Courses may also form further down your digestive tract causing discomfort and making it difficult to eat certain foods.
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It's normally occurs about a week after treatment and should clear up in a week or two.
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Who did the body only feel sauce to eating certain food becomes difficult it could leave you feeling tired and low on
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energy.
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The body needs plenty of fluids and various vitamins and minerals to release the energy stored in food effective.
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stem cell transplant in 2014
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I find myself unable to eat much food had a metallic taste and I didn't enjoy an alcoholic.
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What's the name of my music presents a month later things gradually return to normal?
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Here are some handy suggestions to help with your diet during recovery.
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3 full-size meals a day can feel daunting so try eating smaller portions more often.
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During early recovery focus on food you want to eat then what you think is the healthiest?
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It's more important to get the energy needed anything else at this.
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soft foods like soup
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Mashed potato in ice cream easy to swallow if you have a sore mouth.
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Your hospital may also give you nutritional drinks.
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ice lollies or ice pops can help relieve a sore mouth and answer your fluid intake
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Try the drink of the 2 L of liquid.
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They should be non caffeinated.
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You can have with tea, or coffee alongside water juice or cold.
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You might find it easier to water regularly throughout the whole day.
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Please talk to your hospital dietitian.
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They will answer any questions you might have.
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sickness and diarrhoea
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It's common to feel sick and be sick after your transplant because of your treatment medication.
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possible infection or graft-versus-host disease for gvhd
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Nausea normally only lasts a week or two for most people.
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For the same reasons you may also experience.
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Sickness and diarrhoea can make it difficult to get the energy need from your food which could lead to weight loss.
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Play discomfort cause and also affect your sleep and mental well-being.
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Your medical team can give you antiemetic medication that stops you feeling sick.
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anti diarrhoea medication
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Depending on how you feel.
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Identify the foods that make your symptoms worse and remove them from your diet.
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replace lost fluids
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Isotonic drink so sachets of oral rehydration salts replace lost salt and sugar known as electrolyte that your cells need
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to stay here.
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if you have a low number of functioning red blood cells in your body is known as an
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Almost all stem cell transplant patients will have anaemia at some point in their recovery and it's most likely to happen
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earlier.
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This is because many blood cancer and blood disorders stop your body making blood cells.
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Conditioning therapy had pre-transplant will also reduce the number of blood cells.
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oxygen from the lungs to all of the cells in the body
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Red blood cells carry oxygen on a protein called hemoglobin and if you don't have enough of it.
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feeling tired or short of breath
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Anaemia can be caused by other factors including low vitamin B12 or folic acid levels.
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Anaemia treatment will vary depending on what's causing it. So please check with your medical team before taking anything
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yourself.
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They will check your hemoglobin level regularly monitor your other symptoms to decide the best treatment.
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You may be given a combination of treatments in.
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vitamin supplement tablets
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hormone injections known as you approach or keep
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Which stimulate your body to make more red blood cells?
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a blood transfusion
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graft versus host disease
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4GB HD
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After your transplant there are still small differences between your donor stem cells and your own self.
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This means your new Moon System 8 home of the cells in your body because it's season is different.
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Some gvhd can be a good thing because it shows your new immune system is active.
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Can attack any remaining overturning disease?
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However too much gvhd can cause side effects including fatigue.
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gvhd could potentially happen anywhere on your body but often affects the skin digestive tract and
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If you have gvhd in part of your digestive tract I can make eating and drinking different but can also cause sickness and
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diarrhoea.
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Which will all affect your energy levels.
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Coping with gvhd can be a painful and stressful process and discomfort could affect your sleep and mental health.
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the best medication for you
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Generally gvhd is treated using steroids and immune suppression.
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other treatments such as anti sickness or diarrhoea drugs will help relieve the symptoms gvhd cause
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More information on gvhd is available in essential guide to gvhd booklet website.
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problems
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Recovering from your stem cell transplant will be both physically and emotionally.
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Play may be times when you find it difficult to a combination of feeling unwell stress and anxiety.
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It's common to have problems sleeping while you in hospital.
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Play might be noisy or two on the ward or your medical team mini to wake you to check your blood pressure and temperature
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in the night.
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You can also be difficult to get used to a new environment and routine when you return home after treatment.
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You should get better over the first year but some people still struggle to get a good night sleep for longer.
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The quality of your sleep is as important as the amount of sleep you have.
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Having long naps during the day can disrupt your sleep works and make it more difficult to fall asleep at night.
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If your medications make you drowsy and you fall asleep during the day this will also affect your quality of sleep
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overnight.
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So you can listen to some general tips on improving your quality of sleep?
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But you may also benefit from the treatment including a type of cancer.
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call Cognitive Behavioral Therapy
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Information about counselling can be found in a booklet on mental health.
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Go on our website anthonynolan.org.
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If you're struggling with sleep your medical team of female sleeping medication.
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Sarah had a stem cell transplant in 2014.
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I thought exhausted all the time. You don't expect to find it hard to stay upright while you're waiting for the kettle to
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boil when I got home. I found that I couldn't get up the stairs. It was a shock but I didn't give up I said I push myself
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one step at a time.
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Your post-transplant energy levels may also be affected by hormonal changes.
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Depending on your situation your stem cell transplant could lower the levels of certain hormones in your body.
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this includes thyroid hormones
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vitamin D and sex hormones oestrogen and testosterone
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Hormone replacement therapy HRT if you need it.
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It's likely that you will need a lot of different medications during your recovery.
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the control side effects and reduce discomfort
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You shouldn't have to put up with pain because it will have a negative effect on your mood.
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activity levels and
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Some medication can make you feel drowsy and the effect could be greater when they taken in combination with others.
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If you have any concerns about the issues raised in this track please talk to your medical team.
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You'll be able to alter the medication and make your symptoms more manageable.
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track 4
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How can I manage fatigue?
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Maybe times new recovery 140 is unavoidable, but it still possible to take control of your situation and make the best of
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the energy have.
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In this track we look at how we can manage your energy levels more effectively and have your physical activity and quality
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of sleep can affect your fatigue.
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managing your energy levels
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Many patients find the energy levels go through highs and lows during the day.
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It's very easy to overdo it when you get up in the morning and feel full of energy.
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I need to need a nap in the afternoon.
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If you get into the Habit of listening to your body and know how you react to certain activities.
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It will be easier to manage.
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Ask your GP or medical team to refer you to an occupational therapist you can help you plan your daily activities and
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maximize your energy levels and rest periods.
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You may find that incorporating some of the following suggestions in your daily routine will be beneficial.
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Write a list of the things you wanted to eat.
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Next to you prioritise the things you either really enjoyed.
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Are you really need?
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Take a very frustrating to think that you wasted your energy and had to miss out on something important.
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Even if you're having a really bad day.
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Try to do at least one thing.
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It can be difficult but it's leaving something will make you feel more positive and lift your mood.
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Break down your tasks into smaller more manageable goals and make sure you get some rest in between.
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Top up your energy levels regularly and reduce the risk of becoming exhausted.
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Please yourself with activities of spread out evenly through the day.
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Try to avoid routines why your energy levels constantly rise and fall.
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They will help make the most of the energy you have and stop you doing too much.
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Decide when it's best to stop and rest.
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ENT nurse coordinator
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Everybody is different and there is no right or wrong for how much energy you should or shouldn't have.
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Listen to your body do the things that you want to do if you feel able to.
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If you feel like your body needs to rest.
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inset Andres
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Try keeping a diary for a week.
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Newtown when you sleep rest and the activities you're doing
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Also jot down, how tired you feel and the times you feel your best.
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We've included in the printed version of this you can photocopy and use yourself.
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If you set yourself achievable goals that can also be expanded over time it will help you feel in control of your recovery
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and give you a sense of progression.
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Walk around your house.
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Send to the end of your street.
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You might set yourself a length of time you want to walk through.
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Anthony Nolan my transplant tracker app allows you to set these goals and monitor your progress.
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Can be downloaded for free from the Apple and Google Play store.
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Emma has received two stem cell transplant.
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My dad suggested. I write a diary not of how tired I was each day and when but of my mini achievements that day.
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It might be really silly things but as the weeks progress. They became more substantial and I could see a way out.
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exercising and keeping active
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Exercise may feel like the last thing you want to do but it can help reduce fatigue and improve your physical strength.
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You finding your fitness endurance and muscle strength will have reduced during your treatment.
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Keeping active and slowly building up towards structured exercise will be an important part of your cover.
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Getting plenty of exercise and fresh air releases hormones called endorphins.
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Play artist Feelgood singles in your body the lift your mood and reduce feelings of stress and anxiety.
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Play can be difficult to know when it's safe to start being more active after your transplant, but if your medical team
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agrees, you should be able to try a few very simple exercises in your hospital bag.
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If your hospital has a physiotherapist will give you some suitable exercises and stretches the time.
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How's your recovery continues your physio work with you increase your physical activity and progress your exercise
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program.
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focus on maintaining functional movement to begin with
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building up
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you're probably find a more manageable to break down activities into small chunks with some rest and
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If you're really struggling with fatigue or having a particularly bad day physical activity may seem daunting.
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Sometimes even light activity can be a real challenge.
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important to still do something
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And it could help you feel better.
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It might be simple as moving regular.
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Aiming to break up long periods of sitting or lying down by getting out of bed having a wash and moving around indoors.
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Aisling had hair transplant in 2012
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After my transplant I was very very weak.
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I think that the stairs without being really out of breath is part of my recovery or receiving some Physiotherapy and
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those daily exercises help me get some movement back in my routine.
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physical activity can do exercises as part of a home or gym Pro
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Play organised Sport or simply doing tasks around the house or garden.
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You don't have to join a gym or exercise class if you don't want to.
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It's best to build physical activity into your everyday routine.
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It's often easier to stick to something you enjoy it doesn't need much effort.
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How's recovery progress is your exercise program should cover for key areas?
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Aerobic which is anything that increases your heart and breathing?
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You could try walking or jogging cycling dancing or a team sport.
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Resistance involves lifting objects to strengthen your muscles.
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This could be simply carrying the ohaus to lifting weight in the gym.
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make sure you start gently and build up Roger
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Your balance can be improved by practicing activities like.
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Even basic activities like standing on one leg will strengthen your muscles and improve your balance.
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Your flexibility improved by stretching your muscles and moving your joints.
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This will make and paint.
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Yoga tai chi pilates will improve your general flexibility.
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the NHS recommend adults do at least 150
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physical activity 75 minutes of vigorous physical activity each week
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strengthening activities that work most of the body should also be done on 2 Days to Die
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It's also to reduce extended periods of sitting.
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As a guide to moderate level activity include things like brisk walking or cycling.
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We can still talk.
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But you can't sing the words to a song where is vigorous exercise makes you breathe hard and fast.
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If you're working at this level you will be able to see more than a few words without pausing for breath.
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these guidelines
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You should be a long-term goal that you build up to gradually over time.
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Alex had a stem cell transplant in 2016.
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One thing that changed so much for me with a park runs. It was a breath of fresh air for me it gives me motivation.
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A lot of real people doing it so I really recommend it when your strength is back a bit.
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Is there all over the country?
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Your medical team GP might be able to help you access local exercise classes for free and reduced cost.
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Also refer to a physiotherapist prescribe 3 sessions with a personal trainer at your local.
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Some programs for people who have had cancer or other long-term conditions.
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Have a look at what's available through your local Hospice and support centres such as Maggie centres.
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When is it not safe to exercise?
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If you're recovering well, it's safe to do light or moderate exercise.
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There could be times especially in your early recovery when your blood counts are very low.
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It's probably best to focus on moving regularly during this time.
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physiotherapist or another member of your medical team
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Will be able to give you specific advice about exercise.
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Exercise should be avoided if you start to feel unwell in any way as it could be a sign that you have picked up an
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infection.
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If you have a temperature persistent headache.
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aches and pains
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Feel sick or start to feel sick or feel dizzy and faint.
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Is reported to your medical team straight away?
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Getting a good night's sleep.
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Improving the quality and give you more energy and help you recover.
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variety of reasons
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If you can record your sleep patterns using a wearable fitness tracking device or make a note of the hours you sleep you
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can look back on when these problems occur.
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Our bodies have a natural clock building.
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Normally it allows us to wake up feeling refreshed and sleepy at the end of the day.
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Is sleep wake cycle?
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Is also called our circadian rhythm?
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When two Become disrupted general well-being and ability to fall asleep at night?
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Night-time important for your overall well-being and your general recovery so limiting your daytime that is really
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important.
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Extra sleep during the day will make you feel better because it doesn't affect what's causing your fatigue.
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Sorry for late morning early afternoon.
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And limited to 45 minutes to avoid night-time disruption.
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Jimmy had his stem cell transplant in 2014.
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As much as you will need to sleep a lot monster asleep your mind off things whilst you're awake keep your mind occupied by
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DVDs laptops games or puzzles it does help.
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Struggling to get a good night's sleep.
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You might find the following suggestions help.
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Use earplugs and blackout blinds.
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alcohol caffeine and nicotine for 4 hours before sleep
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Don't use devices with an electronic screen before bed.
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Anything that's worrying you before going to sleep.
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Start a relaxing pre sleep with him such as reading a book.
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Stick to a regular sleeping pattern your body's natural sleep cycle will be more settled.
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Create a calm dark and cool sleeping environment.
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Only go to bed if you feel truly tired.
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If he doesn't come try something relaxing like reading or listening to me.
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Mindfulness Meditation can also help improve sleep and reduce fatigue.
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Play how to focus your thoughts on the present so that your mind that the more stressful.
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You can find out more on the website or download the headspace app.
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asking for help
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Even simple day-to-day tasks can be difficult for someone with fatigue.
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We're having a strong support network around you will help relieve the bird.
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Relatives and close friends might be able to help around the house.
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Play me also be able to help with childcare from time to time so that you can get some rest.
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This will give you more time and energy to focus on getting better and enjoying the things you like.
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Other tasks such as your weekly shopping can be done online and delivered to your door. So you don't have to worry about
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finding a trolley at the supermarket.
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If you can afford it paying for a cleaner will also free up your time to focus on your recovery.
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He was received to stem cell transplant.
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Having my family around was a great support.
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My mum and dad put the effort into the boring stuff for me. They were cooking clean so I had the energy to go for a little
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walk or see my friends. I wasn't waiting my energy on the doll stuff.
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I got more satisfaction from the
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You can also access a range of places including social services government benefits and charity.
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Nobody expects you to do everything on your own.
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Many people will be happy to offer support, but you also need to have the confidence to ask for it when you need it.
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Your hospitals welfare officer will be able to help me find the support you need.
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track
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fatigue and your mental health
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Some patients trying to focus on just the physical side effects.
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the mental aspect
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Your mental health is closely linked to your energy levels post transplant.
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Can affect both how you're feeling and your mental agility?
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It can be tricky to work out. What came first your fatigue or feeling low.
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Play can be exhausting and mentally draining to be anxious and worried about your future all the time.
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similarly
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If you're too tired to do the things you want it can leave you feeling down and even depressed.
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In this track will look at how 40 can affect your emotions memory and concentration.
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We also talked about possible coping strategies that you may find useful.
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Hopefully, you'll find it easy to relax and get a good night's sleep by addressing your feelings and finding a better way
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to cope with your situation.
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This isn't always easy.
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Highlighted some of the healthcare profession.
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Finally at the end of this track we have outlined some breathing exercises you can try for yourself.
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They can be used alongside mindfulness Meditation based techniques to help calm your mood and help you relax.
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During your recovery that could be times when you find certain mental tasks more difficult than he wants to.
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Difficulty remembering appointments recalling the names of people objects and concentrating and gender.
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These problems are known as cancer related cognitive changes.
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crcc
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So we recall and process information.
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We often go hand in hand with fatigue.
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How many patients find the experience more crcc when their fatigue is also bad?
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Research into crcc.
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Despite some promising early results there are no established treatments for yet.
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However, there are many tips you can use to manage your situation include.
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Making list of the things you need to do more important thing is it will be 9 to 4?
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This could be your phone and post it notes in easy to see places.
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Always keep important things such as your phone and keys in the same place of their easy to find.
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Find a quiet place with few distractions to help you concentrate on a task.
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Turning off the TV or radio will also help you concentrate.
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Try doing a heart attack to the start of the day when you feel less tired.
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Getting into the same daily routine will make things more familiar and easy to remember.
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crosswords jigsaws and other puzzles exercise your mind and make it stronger
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Anthony Nolan's lead nurse
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There is a connection with mental agility in physical fatigue that we see in patients.
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Is really important to acknowledge and should be discussed with the same emphasis?
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your emotions
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There's no right or wrong way to feel during your recovery.
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I'll probably be times when you're worried x when you're scared and times when you want to cry, but that's ok.
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Sometimes it's reassuring to hear that what you're feeling is completely normal.
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Take a very easy to get lost in a circle of negative thoughts during your recovery especially if you're tired or have one
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or two setbacks along the way.
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Try to also remember the positive X and when you felt in control.
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They will give you a sense of progress that delete a thought of hope and positivity for the future.
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Sarah had a stem cell transplant in 2016.
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Mental health is often overlooked when going to a stencil transfer.
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Mental health problems can occur when you least expect it many years down the line.
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Find yourself.
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Take a break and know when to seek support.
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It's impossible to see what will work best for you and some things may work better than others at different times.
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You might find useful during your recovery.
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Here are a few ideas to get you started.
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What you're going through isn't easy.
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enjoy the little things in life that will lift your
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Slice of cake when it empties go out for a nice always wanted to do.
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whatever takes your fancy
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Many patients also use their favourite comedy stand up.
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You might be familiar with the idea and mindfulness Meditation relaxation techniques.
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Activities like tai chi and yoga also combined gentle movements with elements of meditation.
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These activities can help you become more aware of your feelings and focus your thoughts on this.
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Even simply taking a deep breath and really calm your nerves.
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When we experience difficult times in our lives it can be easier to talk to someone we don't know.
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Counselling or talking help you come to terms with your feelings and change your behaviour.
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in control of your emotions
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GP will be a cancer.
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If your situation allows you can pay to see someone private.
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Alex had his stem cell transplant in 2016.
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It was a child to talk to people sometimes and I knew full well I wasn't great company.
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I look back now and think how easy is it to reply to a text message, but it was tiring to even think about it.
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That's how bad the fatigue was.
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If you need some extra help.
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Charities like Macmillan and Maggie's phone the purpose-built Cancer centres with the aim of Supporting patients and their
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families.
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They provide a calm and tranquil place for cancer patients to focus on their recovery.
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health professionals who can help with my topics including
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And emotional support.
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We also provide recreational classes professional talks and support.
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Show me Anthony Nolan patients and families forum you can read and talk about a wide range of topics related to stem cell
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transplants.
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Take your time and was involved in the discussion as you like.
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Some people in reading about the experiences of other people without feeling the need to contribute themselves.
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More information is available on our website anthonynolan.org.
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Your mental health and stem cell transplant.
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Crispin had his stem cell transplant in 2013.
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I did some counselling with the Maggie centre. I really benefited from sitting down and talking to someone who was not
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personally involved.
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Underestimated the value of that kind of therapeutic chatting.
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Sometimes you just need to take a step away from yourself.
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You will now lead you through a simple set of mindfulness breathing exercises that you can practice on your own.
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Mindfulness is a meditation based approach that helps you stay calm and focus on the present rather than worry about the
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future.
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Focusing on your breath can be a good way of clearing your mind of other thoughts and concerns.
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Start by finding a relaxing and comfortable position.
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You can stand if you want, but it might be better to sit or lie down.
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Play some background music while you practice your brain.
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Now close your eyes.
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And then story exhale through your mouth.
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Repeat this a few times.
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Continue to breathe.
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How your body feels?
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focus on your lungs filling and
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And the Rhythmic rising and falling of your choice.
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10 minutes
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Hopefully the short exercise that you can practice every day will leave you feeling calmer and more relaxed.
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5-minutes exercise for yourself
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Information on breathing exercises and other mindfulness techniques is available on mindful.org.
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living with fatigue
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Many patients underestimate how much in effect 40 can have on their lights at their transport.
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One of the biggest challenges you might face is explaining 42 friends and family.
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They might think that because you've had a transplant you know but I can get on with life as normal when in reality you're
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still record.
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There will be times when you need help from those closest.
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Simply be helping with daily tasks like shopping and housework, but you also need their emotional support.
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It may be times when you're feeling down and don't really want to be social.
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It can't be difficult to tell you. I'm still sure that you appreciate the help they can.
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how to show them the printed version of this audio guide to understand what you're dealing with
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Rachel received to stem cell transplant for aml.
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I'll get up at 8 in the morning and by 10:30. I'll be snoozing on the sofa.
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Even ask yourself.
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Am I making this my really this tired because I've never felt anything like this before.
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Depending on your situation, you might have to work while still managing your foot.
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This can be a challenging time.
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They should be able to plan in place to help.
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Many patients have a phased return to work.
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Where are their responsibilities or time spending?
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You can find more information on the patients and employees.
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extra information and support
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The patient services team Anthony Nolan provide information and support to anyone who is having or recovering from a stem
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cell transplant and their families.
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You can talk to a member of our team of anything by calling all three off.
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303
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Email patient info at anthonynolan.org.
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You can find support and advice from other stem cell transplant patients and their families by joining our patient and
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family store.
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You can sign up.
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You can also follow our patients and families Facebook page to receive news and updates.
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You can also download or order our free information booklets and find links to other organisations who offer support at
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anthonynolan.org.
Information published: 24/10/19
Next review due: 24/10/22
