Tuesday 30 November 2021

5 Money saving tips

I'll be the first to admit that I used to be rubbish with money like many people but now I feel like I'm fairly savvy when it comes to money and here are some of the things that I find helps me to save money as well as spend more wisely.

1. Use an app for monitoring your money

I personally use an app called Pocket Expense for keeping an eye on my money and I've found it really helpful. Before I used a spreadsheet that I created myself and there I'd put what I'd spend where or what income I had coming in such as my PIP disability allowance or a refund. This app now does the same thing but it's a lot easier and I like to colour code everything so have thins on the app and the icons for different spending categories such as a purple telephone icon for my monthly mobile expense. I'm sure however that there are many other similar apps out there for you to use too.

Other recommended apps can be found here.

2. Set a no-spend goal

To help me save money I put myself on a no spending goal on purchasing craft things and stationary (except the obvious essentials like glue). I did this as I already had plenty of craft supplies and stationary and I didn't need more so I set myself a goal to use up what I already had to try and save money. I've been on this ban for a while an I still have a lot of craft and stationary supplies (so I think I'll be on this no spend goal for a while). Plus also doing this has helped me to feel good about how much money I have been saving and showing myself my resilience to not buy anything new and using up what I have.

Maybe you could do something like cutting down on buying something like take-out coffee, sweet treats, alcohol, eating out or take aways? Think where you spend your money and how you may cut back such as making coffee at home and putting it in a thermal mug to take out or making your lunch at home rather than buying it etc?

Apps like the one I talked about above can help you work out where your money goes so you can see places where you can implement a no-spending goal.

3. Stick to a budget

Sticking to a budget can also help you save money. It might be something like how much you spend on your weekly food shop, when you go shopping for clothes or at theis time of year how much you spend on Christmas gifts.

With the latter I made a list of all the people I'm sending gifts to and then I set a budget on how much I was going spend on each person. I also put some money aside earlier in the year to hep me with my Christmas budget.

When you stick to a budget is can help bring a sense of achievement as the money you've saved you can put aside for something else to to put into your savings.

4. Be savvy with shop membership offer and deals

Joining up with shop membership scheme or advantage cards or other similar scheme can bring a lot of benefits. You can get discounts or you can earn points as you shop which may hold monetary value or you may get special member discounts or offers.

With my memberships I'm always looking at what offers they have for me and some places target you with certain deals based on your past shopping history. 

I think my biggest success has been with a particular store which I shop from a lot for toiletries and makeup and gifts. For each pound (£ GBP) I spend I get 4 points (4p) but if I look out for deals I might get triple points or an extra 200 points if I spend a certain amount or 150 extra points on selected brands or 3 for 2 deals etc.  With this store I save up what I need to buy and look out for their offers and then I do a big shop so I claim the additional 200 or 500 points or free products or on a couple of occasions a free mystery box worth £30.

The points I saved with this membership has really helped me with my Christmas budget as the money I had on my account I was able to use on Christmas gifts (and to treat myself too).

5. Open a savings account

Savings accounts accounts with banks can help you save money. You might want to do something like transfer a little money aside each month from your current account each month to help it grow or just save up and transfer a little aside when you have a little spare amount.

You can search around online for which banks have the highest interest rate on saving accounts or offers for opening a new account. A couple of good comparison websites are Money Saving Expert and Money Supermarket.

An alternative to a bank savings accounts are stocks and shares savings accounts. The interest rate on these accounts are much higher than what banks can offer and though they depend on the stocks and shares market it is something that I would say is something to defiantly look into if it is something you are able to commit to [more than a bank's savings account]. On company I can personally recommend is Foresters.

Tuesday 16 November 2021

Mental health & disability

Recently I decided that I needed to address mental health more here on my blog. It's something I've shied away from possibly because I've had experiences where my illnesses where not fully understood and where mistaken for being psychosomatic or that I'd over reacted turning a twinged hip into one that has dislocated. (Note: having hypermobile Ehlers-Danlos my joints do dislocate a heck of a lot ore easily, so no I don't have to be in a car crash for my hip to dislocate). In all honesty when healthcare professionals think I'm 'making it all up' it's really upsetting and I don't feel like my very real and very physical illnesses are believed and are poorly understood and at time it's makes me question myself. Having rare illnesses or poorly understood diagnosis's is often really hard. I know the medicalisation of my life and my life with the conditions I have often better than most doctors, especially when you live in a small town. Sometimes talking in medical terms makes professionals think that I've been on WebMD instead of living with chronic health problems and because my illnesses are poorly understood I've often not been given the care I  need; this is especially the case in A&E.

What staff can do is listen to me and let me use my expertise by experience and learn that a 28 year old may need help with certain tasks most people my age can do for themselves. Also just ask me what would help me the most like turning the lights off in the room and keeping the noise level to a minimum and ensure I am comfortable and have the tools to communicate to name a few things. Also along with that with the new NICE guidelines I hope that staff will follow the new guidance for the care patients with severe M.E may require as I find out of all my illnesses the hospital environment flares my M.E up the most.

Now, back to mental health. My struggle with my mental health precedes becoming chronically ill and now my depression and anxiety are exacerbated by my chronic health problems and disabilities. 

Being chronically ill/disabled is pretty much a full-time job. All the time without a break you are dealing with symptoms, bad days, medication times, appointments, chasing up professionals, sending letters and emails, making phone calls, ordering medication and other medical supplies, endless waiting for so many things - the list goes on. There is so much more to having chronic health problems and disabilities than meets the eye.

For many people as well as their physical health it deeply takes a toll on their mental health unsurprisingly. 

Everyone has mental health and it's important that we look after our mental wellbeing as much as we do for our physical wellbeing.

Since becoming ill I've found a gap when it comes to mental wellbeing. When I developed depression and anorexia as a teenager I was able to access psychotherapy and other care. However when I became chronically ill there was and is little emotional support to help me deal with being chronically ill and little of it has come from the NHS and never from mental health services.

I became ill in 2013 and was officially diagnosed in 2017 with FND and M.E - my other diagnosis': hypermobile Ehlers-Danlos Syndrome, PoTS and a few others all collectively being my 'main' conditions followed shortly after when I was referred onto other consultants. Even after then after being given  name to my illnesses there wasn't a massive shift in the help I was receiving physically let alone for my mental wellbeing. It wasn't until 2019 when I when into a specialist ward for my FND and the severity of my M.E that I received some sessions wth a health psychologist. In these precious sessions it was the first time I was able to talk about and work on how my health was affecting me.

There is health psychology services, there's even one at our local hospital. The specialist ward I was on tried to refer me as part of my after-care following discharge but the service only accepted those with certain diagnosis' and non of mine where on their list. Plan B was for a psychologist from our local mental health services to see me with support from the hospital's head health psychologist, who from what I was told was interested in 'my case' (gosh I hate that term, I just feel like my oversized hospital file as opposed to a real person with whatever is in said oversized file). That Plan B never came to fruition. It felt like my mental wellbeing wasn't important to them. I also felt that the support was denied from both health psychology and mental health services because I didn't fit into a nice neat tick box - I didn't have the right physical ailment and neither did I have a sufficient enough mental health diagnosis (despite my diagnosis of clinical depression).

However, positively, upon discharge in my after-care plan I was also referred to a Social Prescribing service and they where able to refer me to a counselling service which they had a pot of money for. Reflecting on this this has been the better option. 

Counselling isn't for everyone but for me medication alone doesn't work alone. Now I've been seeing a therapist (and there's no shame or weakness in seeing a therapist or indeed taking medication for your mental health) it's really helped. It's helpful to have someone from the outside who's just there to listen, support me and help me see things in a different way (and how it's all confidential too). I can talk about how down I get when I'm stuck in one room, or how out of control I feel or how I get 'sick and tired of being sick and tired' or how I wish I could quite my disabled full-time job and also the ability to grief for a life that's been turned upside down.

I think there's a lot of awareness around how our mental wellbeing can be affected by lots of things - job loss, family breakdowns, bereavement, being a victim (or more-so a survivor) of crime etc. However I don't think that many people attribute chronic illness and disability to poor mental wellbeing and I think more needs to be done about this. For example more health psychology services and them accepting a wider range of illness to be directed to their service. I also think that GP's, consultants, nurse specialists etc need to become more aware of how someone with a chronic illness or disability may as a result of their health may be struggling with their mental wellbeing. I know within the new NICE guidelines for M.E that CBT - Cognitive Behavioural Therapy - is now recommended as a support tool but the problem with that is that for some, like myself, CBT isn't the right sort of therapy for everyone and other types of therapy may be more effective.

I'm so grateful to have access to therapy as I know for some it isn't something they are able to access. I think mental health and wellbeing within chronic illness and disability also needs to be talked about more and considered.

Lastly I just want to say to those who are chronically ill or disabled that it's okay to not feel okay; we're allowed to be upset, depressed, bereaved, angry, frustrated, fed up and every other emotion named and un-named. Also don't feel afraid to talk about how you are feeling emotionally - your mental wellbeing is just as important as your physical wellbeing; speak with your GP or your consultant or your social worker as they may be able to help. Also talk to family or friends or even a helpline. As good as it is to talk to my therapist I find it good to talk to my friends who also have chronic health problems as they 'get it'. 

Also importantly and I can speak from personal experience on this point is to live outside the bubble of your health problems. My friend once shared this quote "your life is like a piece of cake and you have ten portions, but only one portion is your health". It is so important for your mental wellbeing to yes deal with your health problems but to not have them as the central sole of your life and existence. When I realised this and started to focus on all ten portions of who I am it massively has helped my mental wellbeing.

Text reading your life has ten portions but only one portion is your health Ruth. A box with text reading me with an arrow pointing to a circle. Another box with text reading my health with another arrow pointing to a smaller circle within the larger circle.

Tuesday 9 November 2021

My new normal? Plus new M.E NICE guidelines

With my health conditions especially my M.E and FND I go through dips, sometimes lasting a few days, a few weeks or even a few months before slowly returning back to my old 'normal'. Often however when I'm having a long dip I begin to wonder if this is my new normal. Basically when you have a chronic illness you have you baseline 'normal' - what level of being ill is normal for you and then within that you generally have your good and bad days centred around your baseline and then you go through dips. For some people they can experience a period where they improve but unfortunately I've never experienced this.

Recently I've not been too great especially with my M.E and I've been struggling more. My M.E is classed as severe and has been so for several years now. At first I was just not feeling my best and then I developed a chest infection. As for my my M.E is experienced more as a neuro-immune illness I am more prone to infections and it takes me a while to recover from them. So I just put the exacerbation in my low energy levels and feeling generally unwell and other symptoms down to my body firstly feeling rubbish from both the infection and the antibiotics and then finding it hard to get over my infection. But as time goes on you start to wonder if this worsening of my M.E is my new normal. Alongside that now having a profiling hospital bed at home feels another step into my illness and though having this bed is much better for me and is helping me it's like another confirmation of the severity of my ill health.

For me I've started to wonder this and you begin yet another cycle of grief for yet more loss of your health. I'm grateful that at present I'm having counselling and can talk to my therapist as well as having some really good friends that I can turn to.


Revised M.E/CFS NICE guidelines

I don't want to say too much as I haven't yet been able to fully read the new NICE guidelines. NICE guidelines in the UK are basically instructs professionals on how best to deal with and treat [most] illnesses.

For a long time the NICE guidelines for M.E/CFS (Chronic Fatigue Syndrome) have been pretty poor, lacking, not fit for purpose and for many people with M.E/CFS harmful. The old guidelines as treatments for M.E/CFS have stated that two main treatments to be given are CBT - Cognitive Behavioural Therapy and GET - Graded Exercise Therapy. 

In regards to CBT it mainly made out that the basis of M.E/CFS was psychological as opposed to being a neurological/neuro-immune illness. Then when GET was prescribed to patients for many it did more harm than good. The PACE trial was an absolute disaster and very misleading on how CBT and GET was truly affecting patient and when the true figures for how CBT and GET affected patients it proved just how harmful CBT and especially GET was for people with M.E/CFS. Yes for some people CBT and/or GET did prove helpful but for the vast majority of patients the way M.E/CFS was seen and treated needed to be changed.

I now this from personal experience. There are many different forms of psychological therapy and for me psychologically CBT isn't the right type of therapy for me. Then when I was prescribed GET it was just impossible and made my M.E worse and my body just shut down even more.

In a poll by the M.E Association when people where asked if the agreed of disagreed with the erasion of GET from the new NICE guidelines 100% of people who filled in the poll agreed with GET being removed - link here to the poll results.


The new guidelines

The new NICE guideline for M.E/CFS took three years in the making and the launch was put off as more consultation and investigation was felt needed but now (yay!) they have been published.

GET has been totally erased as a treatment and CBT is now seen as a support tool to help patients cope with the emotional effects of their illnesses rather than it being a treatment to 'improve' M.E/CFS. The new guidelines also have a dedication section for patients with severe and very severe M.E/CFS (which I have read) and some of the recommendations on how to support those patients I felt was very positive and I hope they will go on to help my own care and support needs. For example the new NICE guidelines state that home or virtual visits are recommended and I know from the years of having severe M.E how challenging it has been at times to get care at home. Other little suggestions I liked sure as ensuring that a private room is offered to patients and that the environment is kept quiet and lights are dimmed and personal care is best being given by those that know the patient well who are familiar with the individual's needs.

A link to the new NICE guideline for M.E/CFS can be found here: https://www.nice.org.uk/guidance/NG206

Tuesday 2 November 2021

It's okay to use a mobility aid

Recently I've come to realise that some young people/young adults with chronic illnesses and disabilities feel afraid in using mobility aids. I watch a fair bit of YouTube and one content creator made a mini series looking for either a mobility scooter or electric wheelchair and in the videos she was afraid of the aesthetic and clinical look of these mobility aids. Then another YouTube content creator has shared her story about her anxieties initially around starting to use a walking stick and then a wheelchair and then in the comments of her videos others shared their anxieties around using mobility aids also.

I think there's a long standing stigma around disability for young chronically ill and disabled people as aids especially I've found are often associated with the elderly. All around us in society and on the media we see older people using walking sticks for example. I've also found that when going through catalogs and looking on websites that sell aids nearly all the time the models used are older people. It even makes me second guess if I need a particular product when their targeting the user of such as thing at someone much much older than myself. This creates a lot stigma around mobilities aids and other aid products that these products are just there to be used by the elderly.

When you have an acquired chronic illnesses your life slowly turns upside down and what it once was pre-illness is no longer there and it's a huge adjustment; I know this from my own personal experience.

For some people their illness can affect their mobility; they may struggle with the functioning of their legs or walking may exacerbate symptoms such as pain and fatigue. This is where mobility aids - walking sticks, crutches, collators, wheelchairs etc can be a massive help and in the name mobility aid. But there's a lot of stigma around mobility aids and some young people feel put off from using mobility for fear of being questioned or judged for example (this has come from what I have seen and read on YouTube in videos and in the comments section).

Close up photo of a pair of crutches part of the upper black plastic component of the crutches is visible and then the main stick component is shown and the design on this is a colourful floral print
The floral design on my crutches
I've been using mobility aids for years now. Initially I had a fold-up walk-in stick for when needed to then using my walking stick all the time. I then progressed to using crutches and now I use a combination of either my crutches or my wheelchair. I hated my grey NHS crutches - they where so clinical, uncomfortable and they just didn't feel right and I didn't feel like myself and I felt like they made my disability more obvious and people often assumed or asked me things like had I broken my legs or what was wrong with my legs. 

When I got my purple spotty crutches I felt more me and they where more of a permanent fixture in my life and to my mobility rather than a 6 week use of NHS crutches for a broken legs or ankle sprain. (My walking stick before these crutches where a floral print.) I feel that having a mobility aids with a design on them helps me in a way as they express who I am and my style as opposed to glaringly obvious NHS grey crutches identifying my use of them. Especially as my use of crutches is that is permanent - anyway that's just how I feel about my crutches (and the accessories I use on my wheelchair).

Another point I feel that needs putting in this post is the portrayal of disability in the media. Occasionally you see the odd main character in a wheelchair but to my knowledge no one young in the 20's and 30's age range. When it comes to crutches and walking sticks you see even less and the only main character that I can think of is Hugh Laurie who plays Gregory House in House M.D. (there's maybe more out there).