Who cares for the Carers?

 

 

When I began caring and having the responsibility of look after my mother, I didn’t realise how challenging it would be because of mainly the under resourced social care and mental health services that were involved in her care plan. In addition to this she has complex health issues and this led to stress and a vulnerability to my own mental health issues. They say mental ill health can be genetic but given the length of difficulties carers face and the lack of time GP’s have to identify needs at consultations, there is no wonder that there is rise in mental health problems in the caring population. When you stop caring, you can become affected long term with health issues.

My mum as a much better care plan now and as a relative, my views and feelings are always taken into account about her care. It has taken a long time to get to that point though.

 

Above is a short TV interview from 2013 on BBC breakfast news.

 

For more info on carers please visit Carers UK

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The power of peer support

Knowing who to turn to when you first start experiencing any emotional distress is tricky. Understanding what ‘depression’, ‘anxiety’ is for you in the first instance can be complicated, scary and overwhelming, let alone knowing who to feel safe and trust with your feelings is another matter altogether. We are all unique, have come from diverse cultures and backgrounds and want to be approached in different ways. Having felt isolated for such a long period of time or dealt with feelings that you have not experienced before, can make it difficult to talk in front of new people and build up the confidence to speak about life experiences without feeling judged and under pressure. To speak in detail about what has happened to you to a trained counselor or other mental health professional is beneficial however, to have the connection with others who have shared similar experiences with their mental health can help you completely shape your journey with your life changes. You might be reading this and be thinking about speaking to someone. There are also some good helplines out there. At my lowest times though, meeting new people was not on the agenda but helplines were fantastic for me. Sleeping was too!

Peer support is becoming one of the main areas of your support network alongside your regular appointments and health care, other social outlets, health professionals, nutrition and healthy eating, work or education. GPs should be prescribing peer support when you are at a stage with your mental health to be out and about meeting people. Having self-management of your health conditions is really empowering too.

We have always been connected to peers in many ways, for example at school, work and in your community. Being surrounded with like-minded individuals and ‘experts of experience’ can change how you see yourself, your perspective on your health condition and give you some tips to looking after yourself and your family, if you have children or care for a relative. Peer support also can help you put meaning into your experiences and gives you the confidence to speak with your GP or find a therapist. A lot of services are self referral so you don’t need a GP to help you which is handy.

The possibility of healing from emotional pain and finding others at different stages of their journey is so critical. Having hope and keeping hope with the relationship you form with other peers is fundamental to your life,  helping you to become more positive and giving you more direction with your life. Being exposed to others is powerful, firstly because you don’t feel alone, weak or substandard in society. There are millions who have been affected by long term emotional distress which is more than a bereavement or a major, stressful life change like a divorce or moving house. I have always had a low stress threshold. It makes me human and Im proud of all my strengths and areas of development. I’ve had a lot of stressful life events and your mind, body and soul needs support.

There is also some research out there to show the benefits of peer support. The role of peer support is undervalued by commissioners and we need more funding to go into projects in our community, in educational institutions and our workplaces to make it more common place to openly talk in a group or one to one with someone else about mental health or the concerns you have of a family member.This obviously needs to be in a well structured setting with the back up of sign posting techniques to professional mental health services. We can also become triggered or upset by listening to others stories so to facilitate peer support groups, they need to be well planned and set guidelines with boundaries.

In November 2016, I was involved in the developments of a new north manchester MIND group and this is still operating and expanding today. The group now has a social media page to promote its valuable and life-changing service. The peer support service model is saving lives and keeping people positive. Please like the page and find out more. MIND has helped me so much, in ways I cant describe! Well, they have helped save my life. Quite simple!

Psychiatric medications and hospitals

Ive learnt that it is really important for me to have an open mind when it comes to treating my mental health, medically. I was scared to take any medications because the trauma I had seeing my mum in the hands of the psychiatric system. Unfortunatley I still have memories of going with her for electroconvulsive therapy (ECT). I was still in primary school. It was a very confusing time being a child especially as I had to keep my parents illness a secret from friends. ECT treatment is very controversial and as far as Im aware is still offered to some patients for severe depression. Medications and treatment can positively completely change the persons life around or it can cause major deterioration and the patient is suffering more side effects that are worse than the depressive mood itself.

 

If you feel that ill with your mood, please do not suffer and leave it. Self medicating with drugs and alcohol is tempting too. Never been there myself yet thankfully. My mum had always been a heavy smoker and sadly lost weight to 6 stone by the age of 38. There was many social pressures and difficulties in the area we used to live. She was under a lot of strain and torment and we had no help from the police. It resulted in two nervous breakdowns and countless admissions into NHS medical and psychiatric wards. I have never understood why care for mental health is separate to psychical health or why people have to go via the accident and emergency department to report a mental health crisis. It all needs changing!  Many ‘illness and disease’ has an emotional and psychological route cause and I believe many of my physical health issues occurred because of unaddressed emotional pain. It has taken many years in counselling, research and reading to come to my own conclusions and look more into how I can change my diet accordingly. The medical model not always the only option!

I will also say there has been an abuse of power with psychiatry in my mothers case. I should of trained to be a disability lawyer! I have learnt a lot over the years coming in contact with different health professionals and advocacy services. Historically if things had of been more closely monitored, she may have a longer life expectancy. There is still a light inside of me that wants improvements for people living with mental health challenges and unlike other mental health conditions, like dementia, it is hard for people to comprehend it and work out how disabling it can be. If you say you have dementia, people understand it easier and it doesn’t carry stigma like depression.

You’d be amazed on what damage stress does to the body. I remembered  a time when I first felt really unwell with panic attacks when my son was around 18 months and I was very sleep deprived. Sleep is essential and I think I have always had some time of sleep disturbance. Spent a few times in A&E convinced I was having a heart attack. I was determined not to be medicated as of all the different medications my mother had tried and the lifestyle choices that led to her health decline.I got to a point of changing my life and seeking help from other areas to change my circumstances.

I wish I had started medication sooner and got help. Over the years medications have helped at different times and the guidance from  GPs has helped me along the way. You have to take full responsibility of your life and what choices you take with health care. If you get into a room with a GP that isn’t sympathetic about emotional health, then get a different one or ask friends and family who they see.Take some in the room with you if need be or speak to the MIND or RETHINK helplines. Don’t feel over ruled or dictated to by a health professional. You need a partnership with your care, not someone trying to tell you how you are feeling or what to do.

I am not medically trained however I know when I am going to become stressed and unwell and I know what my triggers are. I feel medication is important for some of us, but more so are the loving and strong relationships you keep with people. Areas of your life you have control over such as your relationships are critical to managing your health. Feeling close and settled with people is priceless and friendships should be treasured.

 

 

Working with health professionals

Over the years I have worked with and gained the care and support from GPs, support workers, therapists for different ‘treatments’ to help all aspects of my health. Over time, I’ve gained more confidence and learnt to be assertive at appointments. One of the most difficult appointments have been talking about my feelings with a counsellor and with my GP to help find an anti-depressant that suits and one of the even more tricky parts was safely tapering off anti-depressants and changing over to different medications. At present I am trying an SNRI medication. You learn over time and through some good websites about the different types of medications out there. So far I have tried 3 different types in combination with talking therapy. it has been scary changing medications, being worried about withdrawal and trusting things will work out better for me!  Never feel uncomfortable about doing some research about diagnosis or medications before you see your GP and taking a list of things you want to say as you often become forgetful or have mind blanks by the time you sit with your GP. I even find booking in and giving my name at reception difficult at times.

There is not enough adequate and transparent information out there about taking anti-depressants. Having said that, I have not yet experienced any major side effects. I do look things up on patient forums and discuss my condition with other peers as its so important not to feel isolated. I see my GP every two weeks or have a telephone consultation especially when there may be a lot going on with my health. Don’t ever feel you are a hypochondriac. If you respect your body, mind and soul then see the health professionals when you need to. It is nearly a full time job just managing appointments and keeping track of things! Keeping a diary and note paper at hand for phone calls also helps to remember what was discussed.

I have also found that a good GP will not rush you, with really actively listen, give good eye contact and will ask you relevant questions before issuing a prescription. When I moved to Haslingden, I did some research and asked local people which medical practise was best and what there experiences were. it is frustrating waiting for appointments and getting past the receptionist to make an appointment. If the receptionists are friendly then you half way there!

You may have a care plan if you are seeing a psychiatrist and/or social worker/care co ordinator if you have been an inpatient and are now living back at home. Care planning is having improvements across some NHS trusts in the UK and I urge you to request a copy of your care plan and make sure it is reviewed and up to date. It is there to help you and your family to plan mental health care and other associated conditions and you are entitled to a well managed care plan.

You deserve the best care and having mental health challenges does not mean you should have less quality of care. Remember we are experts of our care. We know us best!

Why I got involved in mental health campaigning….

To cut a very long story short, my mother was severely ill with depression and psychosis since I was a child and I suffered massive trauma and negative experiences with mental health services since around the age of 9. The following 30 years, I have had a combination of different life changing experiences. One of the most difficult and head wrecking experiences was that I did not know why my mother felt suicidal and wanted to die and how vulnerable the illness made her. After all I was a child and she raised me on her own. She did her best parenting me and I am still here today, with courage, intellect and creativity. I would of liked things to be different but I have managed to channel my experiences into helping others and challenging the system when I can. Society is not easy! My mother now lives in a nursing home following a stroke in 2014 and has a good care team after many years of poor psychiatric and community care.

Around 2007, I became a parent and after a difficult labour I experienced what they call post natal depression which I didn’t recognize. At the same time, I became familiar with using social media and thought ‘I need to get help’ and found a good way of connecting with people on Facebook.

This was the start of finding services and people to connect with. I created a Facebook page ‘Making Mental Health Positive‘ and decided I would use the internet to create awareness and actively help provide peer support from home. The page now has over 20,000 likes and a few dedicated volunteers running it to help raise awareness, post uplifting content and so on. We also had an awareness ribbon to raise money and begin a community interest company called Recovery Castle but that did not work out as we didn’t have enough resources, energy and expertise.

One of the best experiences was doing a short speech at the Manchester Think Physical festival about Recovery Castle Community Group and how my passion for mental health awareness stemmed from my mothers suffering and more recently,mine. I am involved in a few advisory groups at the University of Manchester. I really enjoy these meetings and get a lot out of the work.

 

 

Developing a support network

Over the years I found it useful to have a support network. I’ve met and lost different people along the way. I think we all need a support network despite our background and present health. I’ve made a list that may help and for something to think about for the future. Your support network could be humans and/or pets!

Who would you go to if you needed to…..

  1. Have a good time
  2. Have companionship
  3. Get encouragement
  4. To give  you practical help
  5. Someone to guide and support you
  6. Help in figuring out and decision making
  7. Someone to help you understand why you are upset
  8. Someone who has a positive expectation of you
  9. Someone who accepts you for who you are

Notice how I have highlighted the last one. This is essential as we need to be around people who accept you and dont judge you. People that make you feel comfortable to be yourself are the best and most loyal.

You might find friends, support from community services and family can help you in different ways.

 

 

 

Moving House

I relocated to East Lancashire in Rossendale in Oct 2016. An extremely positive move from my old surroundings in North Manchester. I came from a deprived area and after 8 years in the area I made the choice of moving over to a beautiful area called Haslingden and setting up a new home with my partner and my son. I left behind some bad memories and now I’m rebuilding lots of new ones and hopefully many more positive ones.

I found it stressful and was faced with more difficult emotions that I anticipated. My mood began to worsen. I couldn’t understand how a positive change could make me feel so bad. Having talked to my therapist it was evident that I still had some work to do about discussing memories from my childhood and situations that I had to live through.

Additionally, the transition of changing GP, mental health care and finding my bearings in the area have been challenging. Just before I moved I secured a job as a peer trainer in a health and well-being college in Pennine Care NHS, following a year of volunteering experience with Manchester MIND and studying for my degree with The Open University. I actually achieved my degree in November 2016 – I got an Open Degree with honours, 2.2 and met some extremely supportive students and and tutors. I  thought it was not possible with all the health challenges, namely erratic mood swings and a new investigations and screening into a thyroid disorder.

While I was living in Manchester I had some family support from the Barnados Childrens Charity – Big Manchester. They also helped me with the move over to Lancashire.

I managed to find a good school for my son and he settled into his new school in November in time for his 9th birthday. That was priority as I wanted to ensure he was not anxious about his school move and made a good start in a new area. i wanted him to feel the oppositive of how I felt quite often and have the confidence to flourish in a new learning environment. So far the school have been brilliant and have pointed me in the right direction to support services in the area. I have even managed to find my local community centre and attended some craft groups when my son is in school. I have also applied to the school to help volunteer.

One of the most essential parts to our well being is the positive and loving relationships we keep with people and how open and honest you can be with people, especially if you manage a mood disorder or generally are struggling some of the time. I’ll talk about some of the feelings I have had in friendships and so on throughout my blog. My partner is extremely kind, supportive and has been there for me through some very difficult times. He has a wonderful family and for once in my life, I now have a family unit I always needed and dreamt of. I also have some amazing friends and if you are reading this, thank you for putting up with me!!

 

 

Lots of good reasons…..

There are lots of good reasons to talk about your feelings. I love who I am and how I feel sometimes even though some days I feel different, or unusual, low or just not me! Some days I have felt suicidal…..I’m hopefully past that stage at the moment but lets see. Talking about suicidal thoughts is really important.

One of the main reasons I wanted to write a blog was for self-reflection and wisdom. It may help others too and that’s a positive thing. I can leave a legacy for others too and speak out for my mother who suffered for decades from severe depression.

 

Here are some areas I wanted to focus on in my writing:

 

  1. How I have managed relationships with my health professionals to look after my mind and body
  2. Why taking psychiatric medication is not to stay ‘ happy ‘ , it is to help you exist and function day-to-day
  3. The importance of peer support (being around like-minded people)
  4. Making therapy choices
  5. Learning about triggers and what can harm us
  6. Why diagnosis can be useful and not useful
  7. Understanding what keeps you well
  8. How depression can guide you and help you (yes hard to believe)
  9. Why my mother suffered more than she should have
  10. How thyroid disorder influences our mood

I love pancakes

Welcome to my mental health blog. This is a part of my ongoing journey.

We have our mind, body and soul. We need to look after all of the parts that make us whole.

There is no connection to pancakes to our mental health other than the fact, I was making pancakes for my family and decided that is what I will name my blog. I like randomness and creating things from scratch that sometimes make no logical sense. Its part of the creative mind!

You’ll get to meet my family, my cats, my opinion and my outlook on life and through the good days and the bad. Ill also be sharing some healthy living tips and survival through emotional distress. You may or may not be able to relate.

I hope followers to my blog will find it amusing, useful and thought provoking.

Enjoy 🙂