With the shorter days and longer nights it appears we could go into hibernation. That’s not always a good idea.
With the shorter days and longer nights it appears we could go into hibernation. That’s not always a good idea.
Last year I got an invitation to participate in the Chronic Illness Inclusion Project (CIIP). It’s run by an amazing woman called Catherine Hale whom I’ve now got to know well.
The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.
We often use the word spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this concept makes sense to us and it’s easy to explain to others it’s not one that is easily recognised by medical professionals.
The CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.
Whilst I love using the term spoonie and have badges with a spoon on then I can understand why some people think that we need different terminology.
Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted.
We’re not “just tired” as people seem to think, it’s more fundamental than that. It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.
For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I spend two hours having a shower and getting dressed when I’ve got nowhere to go.
That’s my personal choice and one of the things that gets me so mad with social workers and occupational therapists is that their focus is about pushing me to do tasks which make me too exhausted to enjoy the end result.
How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”. That’s no way to live.
We need to explain to medical and other professionals that being energy impaired has a huge impact on every part of life. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition.
Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day.
If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks.
That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them.
We talk about people having a visual or hearing impairment so why not talk about being energy impaired?
I’m going to start using this new term my blog and elsewhere. I hope and believe that it can change the way we are perceived.
If other disability bloggers and activists use the term energy impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.
Having decided that I would explore the benefits of using essential oils, the first one I tried was a blend called Balance. It is an amazing mix of Spruce, Ho Wood, Blue Tansy, Frankincense and Blue Chamomile. For me it helps when I’m anxious or feel overwhelmed either by things that are going on in my life or what I need to do. I also use it when I’m going into stressful situations, such as meetings I know could be difficult. It helps to make me feel more grounded and keep things in perspective.
From buying Balance, I joined a Facebook group which is run by Rachel, the person who introduced me to dōTERRA. The group is a lovely safe place to chat on line with others who are also learning and Rachel posts some brilliant hints and tips.
One of the articles Rachel posted was about the pain relieving and anti-inflammatory effects of Copaiba. I began to wonder if it might help me as some people have found it helps to reduce the effects of neuropathy. I have quite bad neuropathy in both my feet as a result of trapped nerves in my spine.
I researched Copaiba online and discovered that it is derived from the resin of the copaiba tree which can grow upwards of more than 100 feet and can be found in tropical South America. Copaiba oil is widely used in cosmetic products including soaps, creams, lotions, and perfumes. Since the 16th century, copaiba essential oil has been utilized in traditional health practices by the natives of north and northeastern Brazil. Copaiba can help soothe anxious feelings and it can be applied to the skin to promote a clear, smooth complexion. Taken internally, Copaiba essential oil supports the health of the cardiovascular, immune, digestive, nervous, and respiratory systems. Although Copaiba does not contain psychoactive cannabinoids, the main component caryophyllene may be neuroprotective and have cardiovascular and immune benefits. It’s also a powerful antioxidant that promotes immune health.
All of which sounded good to me! But there was one problem, at the time dōTERRA only sold Copaiba in the US (it is now avaiable in the UK) and I didn’t have the contacts to buy any from there. I did discover another supplier who would ship direct from India, so I bought some and blended it with Frankincense, Oregano, and FCO (fractionated coconut oil). Having put the blend into a rollerball bottle I applied it onto the soles of my feet just before going to bed. I was amazed that during the night that I only woke once instead of several times and that the discomfort in my feet reduced considerably.
I can also get severe pain in my back, usually caused by muscular spasms. Usually I would take Valium to reduce the spasms, but I decided that next time I had a bad pain attack I would get my partner to put some directly onto my spine.
Essential oils work quickly, in 22 seconds the aroma reaches the brain, in 2 minutes they reach the blood stream and by 20 minutes they affect every cell in your body.
I was amazed that within 10 minutes the spasms in my back had reduced and by 20 mins they had gone completely. With conventional medication that would normally take at least 30 mins and often and hour and then it would often return again 1-2 hours later. Each time I used the Copaiba blend the spasms didn’t return.
The more reading I did the more I was concerned that the Copaiba I had bought really wasn’t pure enough. The oil smelt good, but it was very cloudy, and therapeutic grade oil should be clear and pure. Also it came with no certification or indication of what tests were done to ensure safety and purity. I needed to buy the genuine oil.
I was fortunate that I found a group on line where people swap dōTERRA oils or sell on their overstock. I found two sellers who were willing to ship to the UK and I was soon the proud owner of 4 bottles of Copaiba.
I now have the purest form of Copaiba, a certified therapeutic grade oil. I could begin to try to find out if ingesting the oil would enable me to reduce my use of Tramadol. Oils can be ingested by either drinking in water – 1-2 drops is all you need, or by making up your own capsules. I decided to try the capsules because they would be the easiest to carry around with me.
Empty gelatine capsules are easy to buy and I also got some capsule holders so that it was easy to fill them. With help from my partner I filled about 30 capsules. I used 2 drops of Copaiba and topped up,with 3-4 drops of FCO. I learned quickly that you need to make sure the capsule top clicks tight!
I then began to replace my lunch time dose of Tramadol with one capsule, that worked well and after a few days I replaced my evening dose with a Copaiba capsule. I have only had one pain spike in the last 4 weeks when I have needed Tramadol and that was after a fall.
So I am now taking 50% less Tramadol than previously. I doubt that my pain levels will allow me to completely come off Tramadol. But to have reduced my dose so much is wonderful. Essential Oils have made a massive and positive change in my life.
A combination of long term medication is something that many disabled people use to control the pain we deal with each day.
From time to time various scare stories appear in the press and sometimes we find ourselves have conversations or even arguments with a GP who seems determined to stop prescribing medication that works well.
Everyone is different and each of has to find the best way for ourselves.
For several months I decided to use a cannabis spray to try and reduce the amount of Tramadol I was taking. On a bad day I was taking the maximum dose of 2 x 50 mg four times a day. The cannabis spray definitely helped and I began to drop down to 2 x 50mg 2 or 3 times a day. But the taste was pretty vile and I wanted to look at other options.
I’m part of a Facebook group for wheelchair users, which aims to share hints, tips and ideas for making life a little easier. One day there was a post about using essential oils for health benefits and I decided to explore.
What I found out absolutely amazed me. I have used homeopathy and alternative medicine for many years and found it to be very beneficial for things like headaches, cuts and bruises as well as healing after surgery. But using essential oils is another world all together.
The first thing I found was that there are a myriad of companies out there selling oils. Some are organic, others say little about their origins and their bottles don’t say where the oil comes from.
I spent ages researching as much information as I could find and learnt a great deal about how oils worked both physically and emotionally. There is a good amount of research and some really interesting studies. What struck me was the way that both Doctors and Nurses were involved in these studies and use oils in their practice.
There are three main international companies who sell oils. One is based totally in the US with no UK distribution system, so that ruled them out for me. Another company is mainly in the US, with some distributors in the UK. They grow most of the plants and trees in farms they own in the US, with few from other parts of the world.
The third company is the newest and is called dōTERRA, meaning gift of the earth. They became my choice for four reasons:
doTERRA’s process of sourcing is intended to provide powerful essential oils as well as create an industry that uplifts and instills hope in farming communities around the world. This process is called Co-Impact Sourcing.®
doTERRA Co-Impact Sourcing helps local artisans in countries such as Haiti, Somalia and Indonesia. They can provide for their families, obtain sustainable jobs, and have hope in their futures.
The more pure the essential oil, the more powerful the results. Many essential oils available to purchase are not pure. Often, they contain fillers or other elements that dilute and alter the purity, thus diminishing the healthful qualities of the oil. In order to guarantee that the oils you use are pure, doTERRA and a team of highly skilled professionals formulated a successful testing procedure that qualifies doTERRA oils as uniquely pure and free of contaminants. This quality protocol is called CPTG Certified Pure Therapeutic Grade.®
The doTERRA Healing Hands Foundation™ partners with Operation Underground Railroad (OUR Rescue) to bring healing and hope to the world. OUR Rescue exists to rescue children from sex trafficking by utilizing some of the world’s experts in extraction operations and anti-child trafficking efforts.
The children rescued from these extraction efforts are then rehabilitated by OUR Rescue’s aftercare program, and the perpetrators are arrested, tried, and convicted to ensure that they don’t traffic children again.
SUPPORT AND REWARDS
dōTERRA has amazing Wellness Advocates who will help you to explore the oils and find which ones are best for you and your family. There is no sales pressure.
You can become a wholesale customer, get 25% off all your purchases and then get points to enable you to get oils for free. You don’t need to sell to anyone. For those who want to make money, there is lots of support to help you build a business.
My next blog post will talk about the oil I found that has enabled me to cut my Tramadol use by 50%.
This blog post was going to be posted in January, but life and politics got in the way and I actually thought I had posted it. It was only when I went to write the post on essential oils that I discovered it was still unpublished.
So here is the missing January blog:
New Year blogs are supposed to be about plans, ideas, looking forward and even making resolutions.
But what happened just before Xmas 2017 has crept into the New Year and will impact on our lives for some months and maybe years to come.
Part way through December my partner Eve, had a mental health crisis. The worst is now over, and she is doing well. But the outcome could have been very different.
Eve has been vulnerable to depression all her adult life. I had noticed that she had been getting increasingly “down” and was sleeping very badly. I presumed most of this was down to a foot injury that had caused Eve a lot of pain. But once her foot was better her mood did not improve. She had a lack of energy, little enthusiasm, no motivation and her sleep pattern got worse.
We received a difficult email to which Eve totally over-reacted, she plunged into what I can only describe as a dark, murky pool.
This is how she described herself:
“I was furious and frantic. I could not eat or sit still. I had to visit my GP premises that afternoon to make an appointment. I realised when I got there that I was in a very bad state and the receptionist arranged for me to speak to a GP then and there. We spoke and she made a regular appointment for me the following Friday.
The weekend was dreadful.
From this point on I had a constant dry mouth, very poor sleep and appetite. I saw a friend on the Saturday and again on the Monday morning – I could not speak to Fran, though I wanted to, it was so hard.
The following Monday afternoon I went back to the GP practice to ask for the antidepressants that had helped me a few years previously. The GP prescribed Prozac 20mg.”
For the rest of that week Eve continued to be profoundly depressed.
We were able to talk and Eve said more about how she felt. That was good, but Eve was not sleeping and found it increasingly hard to distract herself with reading or listening to the radio.
By Friday when Eve saw her GP she asked for some sleeping tablets. Unfortunately they were useless.
This is Eve’s description of the next two days:
“Friday, Saturday and Sunday night were pure nightmare.
I woke in the very small hours bombarded by intense negative feelings and associated thoughts. Grief and despair. I tried to block them by reading the ‘easy reading’ books that had been all I could cope with all week and by trying to listen to the radio. Nothing was effective.
Friday night almost technicolour, black, red, flashes of bright yellow. Saturday night, dark browns and purples. Sunday night, paler colours, but the thoughts clearer. Definite suicidal thoughts. I blocked myself from thinking about how I might kill myself.
Later in the morning I’d be tired but relatively calm. In the afternoons the anxiety would build up. I’d pace up and down or sit and twitch. Sunday night I managed to eat two mouthfuls of banana, Monday morning, one bite banana, one of bread.
During the weekend I’d talked with Fran about how I might need a hospital admission.”
First thing Monday I phoned our GP and she gave Eve an appointment at 10.30am.
It turned out that the only way to get urgent mental health help is via A&E. The GP gave us a letter, explaining she wanted Eve seen by a Psychiatrist to review and possibly change her medication. We drove straight to St Thomas’s, and after a 15 minute wait got a car park space, and rushed quickly inside.
A& E were brilliant. Very helpful and caring. We must have seen about five people before we got to the liaison nurse, they found a quiet room for us to sit etc.
The liaison nurse was empathic, helpful, and clearly very expert.
She referred Eve to the Community Mental Health Team and the Home Treatment. team. She advised against admission. Even the elderly people’s ward is very disturbed – not a good place unless you are really out of contact with reality.
As Eve recalled;
“My thinking was distorted, rational but not reasonable, but I was not hallucinating or delusional.
Unfortunately it was too late for the teams to see me at the hospital that day, but they would visit me at home the next day. The hospital also gave me stuff to help me sleep for the next two nights.
I felt reassured and a lot less desperate. I slept. I ate a little.
Unfortunately after that things fell apart.
The following day, after Fran phoned to chase them, two people from the CMHT (Community Mental Health Team) and HTT (Home Treatment Team) arrived late afternoon. They appeared to be uncaring and unprofessional, were very reluctant to give us their names and we never were told their job titles.
They asked me if I was actively suicidal – I wasn’t and my partner was protecting me. I would be ‘reviewed’ by their teams some time that week. Then they might do something. No possibility of a medication review or charge of prescription. Nothing to help me sleep.”
I was so angry. I tried to explain how ill Eve was, but they didn’t want to listen to me, and actually told me not to join in their conversation.
Luckily Eve had enough savings for another option to be available. I had previously worked at the Priory in Roehampton. One phone call later, we were told we could have a next day appointment and all that was needed was for our GP to email a referral over.
Within 24 hours we were sitting in the waiting room at Roehampton.
Eve explains what happened next:
The Psychiatrist was good. A careful and sympathetic assessment. I could stay on the same antidepressants, plus a prescription for a small dose of an atypical antidepressant with some sedative action. I was given a second appointment in January when the psychiatrist said he would recommend therapists.
I slept that night. The nightmare rapidly receded. The antidepressants kicked in.
I continued to feel a bit shaky and very tired for a few days.
I’m staying on the antidepressants, and I’ll be looking for a councillor soon.
Without Fran I dread to think what would have happened. If I’d depended on the NHS entail health services, I’d have been in serious trouble.
As it is I’m OK thanks to my partner, friends GP A&E and private psychiatry.
No thanks to NHS mental health services!
Thankfully Eve is continuing to do well and she is enjoying life again.
My previous post was about the formation of two new campaigning groups within the Labour Party. However it did not give the back story as to why Project 125 and Party Participation and Disabled People were formed. This post explains why.
The “official” Disability group within the Labour Party is called Disability Labour (DL). It has a constitution and is recognised by the NEC, Labour’s governing body.
The way the group works, however, is bizarre. Whilst there is a committee consisting of a Chair, 2 Vice Chairs, a Secretary and Treasurer the people elected to these posts at the last AGM were not elected by the membership of Disability Labour as a whole. The electorate consisted of a small group of people who could afford to travel to Manchester to a venue that was not fully accessible. They elected members to an Executive Committee. The EC then agreed officer posts within themselves. Hardly democratic. There were requests for the meeting to be streamed to allow others members such as myself to participate. This was refused by the Chair. There were also calls to allow officers to be directly elected by the entire membership. This was also refused, despite it being allowed within the constitution.
Many members, including myself did not receive the calling notice for the AGM until 2 weeks before. This is a breach of the 28 day rule for calling a DIsability Labour AGM. The irony of the AGM being held on 1st April was not lost on us!
There is another absurd issue. All correspondence to members of Disability Labour can only be sent out via Labour HQ. The Officers do not have membership information and are reliant on others to send out mailings. I cannot fathom any reason for this. I’m a membership officer for a ward in my local Party. I receive the full membership list for that ward together with regular updates. Of course, I have to sign a confidentiality and proper use agreement. Why can the same system not operate within Disability Labour?
I cannot ascertain the number of members DL has. There are 97 members in their Facebook group. The majority of this group are vociferous in their dissatisfaction of the way the organisation is currently run.
The committee does not appear to meet at regular intervals. Members of DL are rarely given details of these meetings and in two years I and other members have never had sight of any minutes or decisions taken. There do not appear to be any audited accounts either.
Two of the current officers tell members that they have tried to resolve the issue of the membership list. However when some members have offered to assist with this process they have not received any response from the officers.
A recent thread on the DL Facebook page has asked if members are happy with the way DL is run. Not one person responding to that post is satisfied with the current arrangements.
I am also a member of LGBT Labour. Their membership system is totally different. No data is held by Labour HQ. Members who are eligible to join the group apply directly to the group and membership records are kept securely by the Secretary and Membership Secretary. There is absolutely no reason why the same system cannot apply to DL membership keeping. Nothing in the constitution of DL prohibits membership data being held by DL officers.
If membership data were to be transferred to DL officers, all that would be required is to inform members of the change and given them the opportunity to decline to have their personal information transferred.
There is nothing in the DL constitution that prohibits members from attending an EC meeting as observers. Previously members have not been given any information about when or where the EC is meeting. This week is the first time I’ve seen the date of an EC meeting. One officer broke ranks and chose to disclose it. As yet we do not know where the EC will meet. I have asked for details, I hope I will be given them, but I’m not holding my breath.
All of this bureaucratic nightmare has a major consequence. DL is not able to represent disabled people within the Labour Party. Many of us experience discrimination and side-lining. This is not acceptable. All sections of the party must comply with the Equality Act 2010.
Party Participation and Disabled People and Project 125, have been launched as a direct consequence of DL’s failure to advocate for its members. We wanted to bring these changes through DL, but that doesn’t seem possible at the moment.
DL should also be supporting the new Labour Shadow Secretary for Disabled People Marsha de Cordova in her role of challenging Tory policies thst cause misery to disabled people.
250 Labour Party members have joined Party Participation and Disabled People and Project 125 has 275 Labour members, both groups more than doubling the DL Facebook group membership.
The two new groups are buzzing with ideas and have committed volunteers wanting to contribute. The skills we have are welcomed and the collaborative working is a joy to be part of. Websites are under design and campaigning materials are being produced.
The Labour Party seeks to be ‘For the many and not the few’, but within its own ranks disabled people are often marginalised or ignored. Many people with disabilities cannot attend ward or constituency meetings. Venues are inaccessible to wheelchair users, there is no loop system or microphones to enable deaf people to participate. This breaches the Equality Act 2010. As yet, no one has sued their local Party. Some are entitled to, as the EA 2010 applies to any organisation with over 25 members. Thus it applies to the vast majority of Labour Party Constituency Organisations.
The current situation is a disgrace. As a Labour Party member I’m ashamed that DL is so badly run, and that it seems impossible for ordinary members to have any meaningful involvement. Change is needed. Change will happen, either within DL itself or by involvement from MPs and the leadership.
The question is when and by whom? It can’t come soon enough for me.
Last week the Labour Party had one of its most successful national conferences. Large numbers of delegates came from all over the UK to share ideas and take part in debates. Many fringe events were over subscribed. The World Transformed ran a parallel event. A festival of politics, art, music and culture, it attracted many who were new to politics. All their events were sold out and many had long queues to gain entry. The young labour people I spoke with were enthused to become more involved.
For the first time in a several years there was a separate one day Women’s Conference. I was very fortunate to be delegated by my constituency to attend. I was delighted to have the opportunity to speak to over 2000 women delegates. Speaking of my 8 year wait to find a suitably adapted flat, I told of the difficulties I experienced getting my care package transferred from one London borough to another, less than 5 miles away. I pointed out the failures of the 2014 Care Act and the need for services for disabled people to be fully integrated. But despite all the good things, one practical issue dominated conference. Access for disabled delegates and visitors. There were enablers on hand at the main venues , but they were not always fully trained.
The Women’s Conference was at the Metropole Hotel on Brighton seafront. The main hall was great once I got inside but the route to get there was tortuous! The access for able bodied people was up a sweeping staircase. The disability access was via a very small lift accommodating a wheelchair & one other person only. Then it was a shlep through back corridors, with narrow corners and fire doors to negotiate. For anyone who could not manage stairs, but could walk with assistance of aids, the walk would have been almost impossible. Whilst there were mobility scooters available to borrow, none would have managed that route. There must have been a level access from another part of the hotel, or from a side road, but no information about this was given to disabled delegates. This may have been for security reasons. But my guess is that arrangements were made without input from someone with a physical disability.
Often it was minor stuff that was a problem. The ramp into the Metropole ended in a door which opened into the hotel, with a press button opener. Getting out again was impossible without assistance as there was no button on the inside! I was told that the disabled toilets didn’t allow for sufficient space to manoeuvre a wheelchair, a common problem. I will never leave my chair outside a loo unless I have someone guarding it. All of these things reduce one’s independence.
There were difficulties for delegates who needed passes for their own helpers. If there were last minute changes to personnel, that meant lengthy queues to get passes sorted. My own delegate pass was not cleared when I arrived and even after it had been sorted when I got into Conference I was told that I only had visitor rights! There was a flurry of phone calls to enable me to be called to speak.
Brighton is not the easiest of places for wheelchair users. Cobbled streets and narrow pavements require careful navigation. But all of the entrances for the Conference venue itself involved passing through safety gates, some of which were both narrow and steep. Others were on the edge of pavements covering dipped curbs, making crossing the road hazardous. Several of the venues for fringe meetings were not accessible at all. One that I attended had no signage and involved a temporary ramp. My helper had to go inside the hotel to find out how I could reach the venue room, then alert me as to where to wait for the ramp. Again, this precludes independence.
One group of disabled people banded together to give out 5000 leaflets raising issues about access and involvement within local Labour Party organisations. Party Participation and Disabled People have been raising concerns throughout the Party. A letter to the General Secretary elicited a reply quoting legislation (The Disability Discrimination Act) that has been superseded. A lamentable level of ignorance. The group is seeking formal recognition of Disability Officers at all levels of the party with elected officers on the NEC and Conference Arrangement Committees.
A second group of disabled people lead by Jonathan Fletcher an activist from Ashton Under Lyne, have come together to form Project 125. At least 20% of people in the UK have a disability. The Labour Party has all women short lists for council and parliamentary elections. There are requirements for constituencies and committees to have BAEM (Black and Ethic Minority) places. No such arrangements are in place for disabled candidates. The group is seeking to ensure at least 125 people with disabilities have the opportunity to stand as parliamentary candidates. With 650 seats in parliament, 125 represents the 20% of disabled people. Both groups are getting backing from MPs. The issue of participation will be raised within the upcoming review of democracy within the party, which will be lead by Katy Clarke, who is currently Jeremy Corbyn’s political secretary.
Disabled people are making sure their voices and viewpoints are heard. There is no excuse for lack of accessibility and a failure to consult. Disabled people must advise on conference planning. I am involved in both groups, we are working together. Our activism and solidarity will enable us to succeed.
This post first appeared on my Huffington Post blog
A couple of weeks ago I booked to see my GP. I had a very swollen right foot. This had started about 2 weeks beforehand. It was not improving even when I was sitting in bed with my feet elevated.
My leg was slightly swollen, but nowhere near as much as my foot. I also had some discolouration. Thankfully I had no extra pain.
Having examined me carefully my GP was concerned that I might have a Deep Vein Thrombosis. My only previous history of DVT was 40yrs ago, when I was on the pill. My GP was also concerned that I may be at risk of Pulmonary Embolism, a clot of blood on my lungs. I had been getting increasingly breathless – though I did not feel it was any worse than when she saw me in April.
But, being as thorough as ever, my GP advised me to go to my local Accident and Emergency Department ASAP. She printed off all my medical notes to take with me.
So, less than an hour later I was at a large London hospital. I was checked in at the desk immediately and only had to wait 10 more minutes to give all my details to the clerk. At this point I will admit to feeling slightly scared, I really don’t want or need another medical issue or diagnosis.
90 minutes later I was seen by a highly experienced professional Triage Nurse called Natalie. My BP was raised at 186/92, my pulse was 124 and my oxygen saturation levels were 92. Both of the latter results are fairly usual for me. My severely reduced lung function had at least, not deteriorated.
Natalie quickly did an ECG – electrocardiograph. This did not show any abnormal rhythms. Despite everything being ok, Natalie made the decision to take me round to the major treatment area to be seen by a doctor.
Within 5 minutes I was seen by Dr Elle. She quickly put a cannula in my hand and took bloods from me. The main test I was going to have was a d-dimer which can show if there are high levels of fibrin in blood. This can give a good indication of the likelihood of having a blood clot in my lungs or leg.
The results would take an hour to come through, so I settled down to read my kindle again. Dr Elle had explained to me that the hospital protocol varied, depending on my results. If my d-dimer was raised, I would have an immediate CT scan and possibly be admitted. If the results were ok, I would be sent home with a short course of blood thinning medication. I would then return for an ultrasound scan of my leg after the weekend.
Thankfully my results were negative – whew!! I was so relieved!!
I went home, rested and took my medication over the weekend. I returned to the hospital on Monday for my scan. That too was clear.
Within another week the swelling on my foot was greatly reduced. What caused the swelling remains a mystery.
I couldn’t help but be grateful for all the wonderful care I received. Whilst Dr Elle was fairly sure I had nothing seriously wrong, I was treated as though I did. The reassurance of knowing I would have those tests was priceless. Yet it is so often something that we in the UK take for granted.
We still have a great NHS despite the efforts of this ghastly government and its predecessors attempts to destroy it.
When I hear of those in the US who cannot get good health care or the level of health insurance they need, it makes me even more determined to campaign to keep our NHS free at the point of use.
WheelchairVista has been nominated!!
Many thanks to the lovely Lucy Lewis of The Thyroid Damsel who has nominated me
The Liebster Award is an internet based award given to bloggers by other bloggers as a way to promote each other and get discovered online.
This great idea first started in 2011. The blogging community is a wonderful group to be part of. I feel truly honoured that my blog as been recognised and nominated.
Before I take on the tasks that Lucy has set me, I want to share a little about The Thyroid Damsel. Lucy has Graves disease, this is a condition causing an overactive thyroid gland. It is the most common cause of an overactive thyroid , also called hyperthyroidism. It is named after the Doctor who discovered it. Lucy also battles with auto-immune conditions as well as fibromyalgia. Her blog gives an insight into her story and how she is still able to work part-time.
As part of my nomination, I have to answer some questions that have been given to me by Lucy, these are her questions and my answers:
1) Why did you start your blog? Was it for money or for love?
I started to blog when I was trapped in a flat that was not adapted for my needs. I could only leave the flat with assistance from a friend or carer, so was going stir crazy! I’ve always enjoyed writing and wanted to use my blog to highlight the difficulties faced by disabled people.
2) What is your favorite thing to do?
I love travel, getting on a plane to visit unknown cities and countries is always a wonderful experience. I took my first trip as a wheelchair user last year, going to Gran Canaria. I’m planning a trip to Malta with friends next year.
3) If you could achieve one thing in your life, what would it be and why?
I would make all transport, shops and buildings fully wheelchair accessible. This would make life so much easier for those of us who have no choice but to use a wheelchair or buggy. It would also enable us wheelie’s to actually do things spontaneously, instead of needing to do days of planning. It would also make life easier for anyone who has mobility difficulties and parents with buggies or pushchairs.
4) If you had unlimited money for a week, what would you do?
I would travel, probably to the US or Canada. I would also use some of the money to help other wheelchair users. So many of us now have to pay for own wheelchairs, and that is often beyond most people’s budget. So I would set up a fund that could help both adults and children. I would also want to set up a project to increase awareness about hidden disabilities and conditions. This would also highlight signs and symptoms that can often be missed in childhood, which if they had been detected earlier, made a huge difference to those people as adults.
5) What advice would you give to newbie bloggers and vloggers?
Find something you are passionate about and become an expert in your skills.
For me the best part of being nominated is that I get to nominate 5 other bloggers for this award. Here they are:
Heather has been navigating disability one way or another her entire life and has recently become wheelchair user. She has years of experience working with physical disabilities, autism, mental health issues and rare diseases, including issues around global delays and palliative care. This is how she describes her blog: The whole purpose of ‘Powered by Love’ is to create a space for change to occur. If you’re reading something and you feel like it’s time to take on the challenge of living more fully as the person you were made to be, you don’t have to do it alone.
Cece blogs about epilepsy and mental health. Her posts are wonderfully insightful and she is often positive in the most difficult of situations.
Due to severe health problems, Katy is 100% house-bound, and spend some of her time – when not inadvertently sleeping – by crocheting, reading, or chatting to all the many friends she has made all over the world. Katy’s posts often highlight social inequality issues.
Sue is a Chronically sick mum, sharing with spoonies everywhere. She has a very rare disease called Adult Onset Still’s Disease. Which means she needs to use a power wheelchair most of the time whilst fighting a fever, flu-like symptoms and severe fatigue, all part of her condition. Sue has also taught psychology, so some her postings have an interesting prospective.
Sarah was diagnosed with Fibromyalgia in 2009. As a result of this she decided to look for new hobbies that didn’t require quite so much physical activity. After a while, the hunt for a life less physical became an activity in itself.
So my nominees, all you have to do accept this award is: link back to this page to acknowledge your nomination, answer these 5 questions and nominate 5 others blogs for the Liebster Award
1) What do you like about blogging?
2) What is your favorite book?
3) What is your favorite quote?
4) What is your favorite form of social media?
5) If you were President or Prime Minster for a day which 3 laws would you enact?
Supporting Grenfell too
For the first time in many years I joined a demo a couple of weeks ago. In my pre-wheelchair days I had been a frequent attendee at CND, Anti-Apartheid and other marches. Having seen the overtly aggressive actions from police increase over the years, I was scared to be part of a demo again. Further damage to my spine could leave me paralysed. That was a risk I was not willing to take.
But as I read the postings on Facebook for the anti-DUP demo and saw friends were going I decided to join them. My anger as a gay woman at the lack of LGBT equality, was one reason. However it was my experiences as a Nurse supporting women from Northern Ireland who had come to the UK for termination of pregnancy, that was my deciding factor.
Forcing a woman who had been the victim of rape or incest (or both) to continue with a pregnancy is beyond cruel. Maybe carrying a child to term would be harmful for other reasons. The psychological damage these women carry throughout their lives isolates them. They can never speak of the wounds they bear. These women need support, not condemnation and religious intolerance.
To force them to travel to another part of the UK and then pay for the operation they quite rightly seek, is wrong. Why should where a woman lives determine if she pays for a operation she needs?
So I found my bright red pro-choice t-shirt and set off the join my friends. I even managed to park in the first disabled bay I found at the back of Westminster Abbey. A minor miracle, that bode well for my day.
I soon found the friend I’d arranged to wheel with. Jay introduced me to one of her friends and another woman who was on her own. We soon swapped stories and found common threads in our lives.
The biggest obstacle I faced all day? No ramps onto the grass at Parliament Square! Why? Are wheelchair users banned from the grass? It may be difficult for us to sit on, but don’t separate us out. Luckily my friends helped me get on to the grass and back to the pavement again.
The speeches at the beginning were inspiring. I was so pleased that supporters of the Grenfell Tower victims were able to join us. That was making our women’s only march mixed gender, unusual but absolutely right at this time. The march was also trans-inclusive, which was another positive action by the organisers. I’m always pleased when the TEFs (trans exclusionist feminists) don’t get to inflict their displaced irrationalism on other women.
Officially the wheelchair users were to be at the front of the march, but as we moved up towards Downing Street, I soon found myself cocooned in the center of a mass of women. I felt fully included and safe. On Theresa May’s door step the chanting begun to increase. “No racist, sexist, anti gay, no DUP no way.” “Torys, Torys, Torys, out, out out”, we continued. Then came the chants for Corbyn. Never in all my 40 years of demonstrations have I been amongst a group of protesters who not only wanted the current government out of office, but knew exactly who they wanted as the next PM.
As I watched Jeremy Corbyn speak at Glastonbury a few hours later, with that enormous crowd supporting and cheering him, I felt the same solidarity that I had been part of in Whitehall. I cannot recall a time I have ever known this strength of positive feeling towards a party leader in the UK.
Slowly, but very surely the political tide is turning. The anger about Grenfell, and the untold stories yet to come. The chaos of the Brexit negotiations and this poison-pact with the DUP will all unravel soon.
Decent, safe homes, a woman’s right to choose, a society that does not discriminate, these are values for all. We will continue to demonstrate until they are achieved.
This post first appeared on my Huffington Post blog.